16 September, 2016

How to cool down a facial flush?


Having a flushed, hot face is very distressing for many people. Your nerves get irritated, you feel like you are on fire and your flight and fight defense system kicks in. Rosacea can make your face burn and flare for long periods of time. It can be a frightening experience, and when you encounter this often, it is good to know what things you can do to cool the flare down, without doing too much damage to your skin. 

I have been dealing with facial flushing and burning for 17 years now unfortunately, and found some things that help me to shut the flares down. 





Physically cool yourself and the flush down

It will most likely be a natural urge for you to look for something cool when you have a flushing attack. When your face feels throbbingly hot and glows or downright BURNS, there are ways to cool the skin and to make the blood vessels in your face constrict again. This I found is the best way to stop the flare. In the long term you can look into more thorough ways to prevent flushing, and I will mention the one I found helpful myself below. But looking at short term treatments, there are ways to calm your flush down right away.


*A ventilator

Fans are great for cooling the temperature of your skin down. Try to not wrap your body up in layers and more layers of clothing and blankets, even though your body might feel chilly and the fan being on might want you to do so. Keep the layers thin, so your increased body heat (as a result of the facial flaring) can release through all of your body, and not just your face.
The fan should be kept at a bit of a distant, ideally. Putting it right in front of your face will not damage your skin right away (although it can dry our your skin in the long run), but it can give your blood vessels an urge to rebound and dilate again once you step away from the fan. Having a steady but milder flow of air is better. Try to keep the room temperature lower than normal. Using a fan in a very hot room will act like a hair dryer on your skin, and might make the flare even worse.




*Airconditioning

It really depends on each and every person which temperatures are too warm and what temperature is just right, to keep their faces from flaring. Usually, 18 degrees Celcius is still OK but 20 degrees can already be too warm for rosacea. For me personally, I prefer 16 or 17 degrees, all time of the year. In summer, airconditioning can help you stay cool. That speaks for itself. The problem of course is when you create your own private Ice Castle in the home, the chances are you will flush much more and deeper once you go outside and the temperature of the air there is significantly higher. There is a theory called the Warm Room Theory, and it explains what happens to your skin when you go from a cold room into a warm room. It explains why big changes in temperature are not good for your rosacea. Written by someone with rosacea. Here is the PDF link to the complete document.


*Cold packs

Cold packs are also called gel packs. You can buy them at druggist stores usually, and they are sold to help with sport injuries primarily. When you place the gel packs in the fridge, they will cool to a comfortable temperature. When you put them in the freezer, they will get either very cold and half frozen, or in some cases rock hard and solid frozen. This is not good for your skin. I'll add some pictures of my own gel packs. I bought them at different stores and put them all in the same freezer unit. Some will go pale in color and become solid frozen, others remain more soft and flexible. A rule of thumb is to try to not have your gel packs too cold; they can cause frost bite and freezer burn on your skin. These are burns. Even though it is the cold that causes them, they will still make your skin get red and hot as a result. There are ways to handle cold packs in order to prevent your skin from injury or damage.

I always wrap my gel packs up in a cloth of some sorts. Never use it straight on your skin! I make sure that it is a shirt of mine and that I washed it in perfume free, neutral washing powder, and had it rinsed out properly before letting it dry. In case of a severe flushing attack, I wrap it around a very cold gel pack and feel the temperature on the inside of my wrist or hands first. It is probably best to check the temperature this way, because your face might feel so hot, that your nerve endings will not be reliable in 'feeling' if the pack is too cold or not. You are better off wrapping the cloth several times around the gel pack, just in case.

In case of a severe flush, I combine a fan with the use of a cold pack and I dab and pat it on my cheeks for short periods of time. Then putting it down again. Then reapplying. This way, you cannot overuse it and damage your skin easily.

One thing to be very very careful with, is using a frozen gel pack when you are lying in bed. I learned this the hard way :(  In 2007, I stayed with friends in Northern Ireland and was particularly flushed one night. I had my gelpacks in the freezer there, and used a fan. I got out to grab my gel pack, wrapped it up, put it on my pillow and pressed my burning cheek on it, which felt really good. I dozed off... And woke back up half an hour later, with a stiff, ice cold and frozen feeling cheek. I got rid of the gel pack right away and rubbed my face a bit, hoping it would be a temporary cold reflex. But the next day, that side of my face was burning badly and there was a strange sort of constant nagging, sharp nerve pain on the spot where the cold pack had been pressing. When I got back home, a few days later, the pain was still there. Another week later I still had it, and because of the nerve pain, that right cheek was triggered a lot more to flush. It was also more red than the other. I was pretty concerned by now that I had done some serious damage to my face and visited my dermatologist. He said he thought I had triggered some neuralgia and had a mild form of frost bite. He sent me to a neurologist at the hospitals pain centre. This doctor was very helpful and explained me that nerves take an awfully long time to regenerate and heal. Six months! By then it was only 1,5 months that I had my symptoms. He prescribed me different nerve pain medications (Neurontin and later Lyrica) and said that I needed to give it time. The pain medication helped but made me more flushed after a while. I stopped them, the flushing went down, I restarted them, my family even noticed that the flushing got a lot worse. And flushing for me means nerve pain by default, just from the pressure on the blood vessels and the facial swelling.


Luckily, after 6 (long!) months, I noticed the nerve pain eased away. But don't you think now that I learned my lesson! :) This silly bint allowed it to happen a couple of times more, ugh.. But luckily never as serious. It gave me big scares though. The past years I have the iron rule for myself, that IF I ever am flushed enough to need a cold pack at night, I will get up. Sit up. In the light. No lying down and bringing a cold pack to bed. My medication makes me sleepy at night and I can be awake one moment and deep deep gone the next, so it's just not safe.

You can also put a cold pack on the back of your neck, as Pippa advised me. It cannot damage your face there and it can still blunt some of the vasomotor symptoms of rosacea, and will help bring your temperature down. In result, your blood vessels can constrict more again then, as there is less exaggerated (and abnormal amounts of) heat to be expelled through the skin.

A hand held travel fan is another way to stay cool, although this will add some unwanted attention to you, when you're out in public.
Travelon has a hand held fan with 3 speeds.




*Spray your face with water mist

For instance with Avene thermal water spray. I had very little expectations of a can of, basically, spring water. But a rosacea friend in the States said she used it in summer to hydrate and freshen her face, so I reckoned I should try it too. Used it in the past to no avail but I have to say, it's lovely. The lady selling it had a long winding story about its proven anti inflammatory and anti redness actions, how it was all tested, scientifically proven and consists nothing but thermal spring water. 








Try to identify what triggered your flair up


And try to avoid it, if possible. Some common triggers for a rosacea flair, with hot burning skin, are:

*sun exposure
*hot temperatures
*stress or emotions that make you feel worked up.
*if you have allergies, things like pet dander, pollen or perfumes might provoke a flare.
*intense exercise
*hot baths or drinking hot drinks
*skin care products that contain irritants. This depends on your skin sensitivity, but things to look out for are parabens, perfume/fragrances, essential oils, dyes and strong acids. Also be careful with sodium lauryl sulfate, formaldehyde releasers -they preserve a product against bacteria, mold and fungi- for instance bronopol, diazolidinyl urea, DMDM Hydantoin or quaternium 15. Foaming agent cocamidopropyl betaine is an irritant too, as well as wool related products (lanolin, wool fat or wax and wool alcohol. See this Paula's Choice article for more information on skincare irritants.
-Strong cold winds
-Some people find that sitting long times behind a computer screen flares their rosacea too.
The same goes for fluorescent lighting, which can actually increase inflammation in some cases.

Also see your medical specialists to be sure you suffer from rosacea, and not from one of the many other medical conditions that can cause facial flushing. Also, it is always good to have blood tests done to see if you have vitamin or mineral deficiencies, including low vitamin D levels, which is very common for people with rosacea or who otherwise avoid the sun. And don't forget to test for HIGH BLOOD PRESSURE, which can really affect facial flushing and burning, and should be brought down to normal values. 







Is your skin very dry? Dry skin is more prone to flushing and redness. Consider using a moisturizing cream or if your skin is too sensitive for this, consider a humidifier in the house. And drink plenty of water.

I cannot really use creams on my face, as they all seem to make me more red and irritated, but this is rare and most people with rosacea are perfectly able to find a soothing and irritant free moisturizer.
Instead, I try to keep the indoor air humid enough. For some people, high humidity is a rosacea trigger, but for me it is soothing on my skin. Just like physical sweating seems to make my skin more pale. Complete lack of sweating can in fact trigger skin redness and flushing. Therefore I use a cold mist humidifier. You can adjust it to just how high you want the humidity to be in your house, and because it is cold mist, it will not increase the indoor temperature.
It is considered 'still standing water' however, so it's important to thoroughly clean the thing every other day. You don't want to spray mold remnants on your face through the air, after all! :)



And of course; always drink enough water. Tea and coffee do not count! I find that adding ice cubes to my water helps me to cool down a lot faster. I tend to put a small plastic bottle with water in the freezer. An hour or two before I need to head out (IF I need to head out, preferably not on bad days haha), I will take it out and let it warm up a bit. Then I bring it along and because of the ice pieces in the bottle constantly slowly melting, you will have very cold, fresh water for hours to come!


 








Take a good look at your diet, and whether or not some of the foods you tend to eat might make you flare up more

I wrote a blog post about food triggers, and it got grossly out of control after I kept adding more and more updates to it, so I will not expect anyone to dig through that whole thing. In summary: food triggers are very individual, but some general rules of thumb are that alcohol, spicy 'hot' foods and foods very high in histamine (think old ripe cheeses for instance) are most likely to flair your rosacea. Otherwise, it's a matter of trial and error, unfortunately. For some people, cutting out foods high in sugar will considerably affect the redness and flaring of their skin. Likewise, grains and/or dairy can negatively impact the skin. You can eat very healthy still by cutting those food groups out, focusing on a high protein (meat and fish, ideally organic, so they contain as little chemical hormones and antibiotic residues as possible) and high vegetable diet. I notice an incredible difference in the severity of my rosacea when I stick to this diet. Problem is; I love sweet stuff! And bad stuff in general, even savory bad foods are a temptation after 5 days of vegetables, fruits and meat. I try to snack on things like dates, coconut, scrambled eggs, olives, melon, the odd rice flour pancake. I make ice sorbets from fruits or rice milk. A day or two of very high carbohydrate intake (delish!) will typically make me more red and flared the next days :/ I try to stick to wholegrain brown rice and sweet potatoes therefore and skip the regular potatoes (YES, crisps count for them too :P ) and all white flour products. This low carbohydrate diet is part of the Paleo Diet, but also of a diet linked to the Auto Immune Protocol.

Again, this is personal and some people notice no change whatsoever in their skin when on a diet. But if you feel your face is flaring and burning and awful lot of times, it is worth doing an elimination diet... What my doctor recommended at the time, is to start with a couple of 'safe foods'. He said; white rice, chicken and salad. Of course, one of those three could be in theory your food trigger, but at least it will give you a short time to figure that out, with only 3 food groups. Then, if all goes as the doctor planned, you will be able to add one new food item to your diet every day.
Now, the problem is of course that not everybody has an instant skin reaction to a trigger food. Some even say that it takes several days for their skin to react. You can take it slowly of course with new food introductions. But most people might simply not have the time for this slow paced food experiment. You can always take a look at your normal diet and try to cut out the worst offenders of the food world (in terms of rosacea); alcohol, spices, old cheeses and other high histamine food (yogurt is also one of them), gluten, dairy, processed (fast)food and high sugar content. Basically; most of the good stuff. It can make an immense difference to some people with rosacea however. There are many stories of big skin improvements, once people started to eat more 'clean'.

I have a feeling that people with subtype 2, papulas, tend to maybe see a bit less of an effect than those with general (non fixed) redness and flushing. Subtype 2 sometimes responds very well to treatments aimed at eliminating demodex mites. ZZ cream used to say it helped but now there is a much more straight forward and reliable cream on the market, called Soolantra. I'm working on a blog post on this. When your skin reacts well to Soolantra and it clears it, then you might really have no need to cut out all sorts of foods in your diet. But ypically, the facial flushing and burning is more difficult to treat and Solantra isn't designed for these symptoms, although it does seem to help sometimes!

If you have accompanying bowel symptoms (or even if you don't!), consider adding a probiotic to your daily diet. Here is a great and easy recipe for home made kefir.







If your flushing problem becomes chronic or disruptive of your every day life, consider medical treatment to control the flushing: 

*anti flushing medication:

-clonidine
-beta blockers like propranolol or atenolol
-Antihistamine medication like Xyzal, Zyrtec or any other brand. Xyzal is relatively new and comes with less side effects (like drowsiness and tiredness) than an old brand like Benadryl.
-certain antidepressants work on the central nervous system and reduce facial flushing. Remeron is one of them, but several others have been mentioned positively on rosacea forums, including Celexa and Zoloft. I wrote here about the medication that helps me with my rosacea symptoms.



*medication to reduce inflammation:

-Antibiotics. Only low dose doxycycline (Oracea / Efracea) will help control inflammation without giving additional risks for antibiotics resistance. It should be the first antibiotic to try, as you can take it long term without the type of side effects that higher dosed antibiotics from the tetracycline family, metronidazole/azythromicine/lymecycline give. Not just resistance problems, increasing the risk of you becoming immune to some antibiotics, but also the risks of bowel conditions and disruption of your natural gut flora. Low dose doxycycline is too low to affect your good gut bacteria, but is strong enough to help your skin fight inflammation.

-Low dose antimalarial medication. Both plaquenil and mepacrine have proven efficient for some cases of rosacea. They need to be taken long term and build up to high enough levels in the blood over a period of at least 5 weeks. They reduce inflammation in the skin. I wrote before about them.

-Some people find relief with low dose roaccutane. This is a vitamine A derivative. It's mainly used for acne and subtype 2 rosacea, with blemishes and papulas, but there have been some success stories for people with only general skin redness and burning and flaring. This drug comes with some more serious potential side effects, although at low dose, the chances of these happening really reduce.

-Other anti-inflammatory medication
Medication from the NSAID group for instance.


PLEASE always discuss with your medical specialist what drugs and supplements you take together. 
A friend of mine passed away due to mixing and matching the wrong medication combination together, and I know of several other people to whom this happened. The more different meds you take together, the more intricate the ways they can interact with each other, and the more at risk you might* be to overload your system. Just be sensible and discuss it with your doctor. Most doctors seem to forget about intermittent check ups (blood work mostly), but always remind your doctor now and then to check blood levels, liver function etc, especially when you take a bag full of medication at the same time (as many of us unfortunately face daily, especially with other underlying illnesses at play). 


-There are natural herbs and supplements that can help control some of the flaring. It's trial and error, one supplement might work for one person, and cause a flare for another. It's best to take the time to try one thing at a time, so you know exactly if something is working or not. I wrote a blog post about natural anti inflammatories.

*Red Light therapy has helped many people control their facial flushing, burning and redness. I am up for a new trial with it soon and will report once I do.

*Lasers or IPL isn't for everybody, but it has the potential to truly reverse your rosacea and facial flushing. Some people have amazing results, some others are unlucky and see no improvement and some are extremely unlucky and got worse from them If you do the research, find a knowledgeable, experienced and approachable laser specialist, and make sure to do some test patching, you increase your success chances significantly.

*Topical creams can help mostly with the papular, acne-like (but not the same as acne!) rash, but some creams have shown potential to control facial redness (erythema) and inflammation. Some of these creams are Soolantra (blog post on this cream will be up soon), Finacea or metronidazole cream. There are more out there, but results vary. And they don't always help with rosacea subtype 1, where the main symptoms are redness of the skin, flushing and burning. For those who can tolerate these creams, they have been helping some subtype 1 patients, however :)

-Some people find relief with low dose roaccutane. This is a vitamine A derivative. It's mainly used for acne and subtype 2 rosacea, with blemishes and papulas, but there have been some success stories for people with only general skin redness and burning and flaring. This drug comes with some more serious potential side effects, although at low dose, the chances of these happening really reduce. Taking too high a dose can actually create or worsen existing flushing problems, so the dose is really important here.

-Mirvaso helps some people but has a very bad track record. Far too many people reported severe rebound after using this cream. Sometimes their rosacea simply worsened from it. Very tricky cream, please inform yourself about the reactions that are mentioned on the web. I made an inventory of the good and bad reviews online in the first year or so after it came on the market, but it is just the tip of the iceberg, as I stopped adding new reviews to the (long) page at some point, but I have since been reading only more reviews. It might help you, but I'd just inform myself first about the risks and also be careful to test patch the cream first for a little bit of time.




Protect yourself from the sun, with sunscreen, hats or if need a sunbrella. 
 







And try to stay positive. Inform yourself as much as possible on rosacea forums or in online groups.


Someone wrote this the other week on The Rosacea Forum, and I very much agree:

"The way I cope is by refusing to give up hope. I keep on learning all that I can about this disease and trying every remedy that I see on here that makes sense with the medical knowledge that I have. I keep hope that one day I will go back into remission. It happened to me once for about two weeks. I've heard of very few cases where it was a doctor whose tireless research found something that brought someone a lot of relief. Usually it is the patient doing a lot of research on their own. I'm not saying not to see doctors. Find a doctor who will listen and take you seriously when you take your ideas to them. Find one who will work with you to find relief and make this livable, but know that you may have to do a lot of the research on your own. Most doctors simply don't take the time. They don't have as much at stake in this as we do. I've learned so much from this group and other websites that my derm had no idea about. It was here that I learned about the paleo diet that has helped me so much, for one thing. My derm had a list of about 7 foods that can be triggers in some people. I discovered that the list of potential food triggers is much more vast than that. Feeling helpless is one thing that can make people want to give up and feel suicidal. Put that energy into learning new things that might help. That's what I've been doing and how I cope."


In general, try to stay active. Don't cut out your friends and family, despite feelings of declining self worth perhaps, or the desire to close yourself off from everything and everybody. In the end, the way forward for most people is to start spending time with loved ones again, letting people in, receiving support and dedicating time and energy again on your work, hobbies, talents. It is very time consuming and stressful to learn to deal with rosacea and to educate yourself as well as you can, and this can feel very overwhelming at times. It is normal to feel depressed at times about the way your skin looks and feels, and about the many lifestyle changes it often demands. But when you feel you are supported and that there are things you can still try, it will most likely improve your mood and your resilience. I wrote earlier about dealing with the isolation that chronic disease brings. I'm not the most optimistic person myself by nature and have periods of depression, but these things have all helped me to get going.



There are also very good and welcoming forums and online patient groups. Here are a couple:

The Rosacea Forum

Rosacea Support Community

The Rosacea Research and Development Institute

A members only Rosacea in English facebook group

A members only Make-up for Rosacea facebook group

A members only Rosacea Healing from the Inside Out facebook group






And last, in summary, this is what helped me so far 

after struggling with rosacea since my early student days in 1999:


-Figuring out what my particular triggers were. They can be different for everybody, and it takes a bit of time and frustration usually to figure your own skin triggers out. In my case they are indoor and outdoor heat, sunshine, stress, chemicals in perfumes and other cosmetics. Certain foods and drinks are also a trigger for me, including alcohol, spices, chemical additives (like E-number preservatives). Foods high in histamine trigger my facial burning and redness as well as foods high in sugar. Gluten make my bowel condition worse and in effect gives me more skin inflammation, including papulas (I normally never get them). For me personally, dairy also makes me more red, as do old cheeses. I sit long long hours behind a computer for my work, but I try to have the brightness set to low, or dim the screen even more with a free downloadable dimmer device.

-Trying out different rosacea treatments. Some worked better than others. Some set me back, but others helped me to improve matters. It has been painstakingly slow and demoralizing at times, and I am still looking for improvement, as I haven't cured myself by any means yet. Things have just improved compared to 2005, when all I could do was use coldpacks and fans and suffer. Always severely red and burning, my blood vessels seemed to have gone ballistic.
I tried so far:

-Traditional Chinese Medicine  (didn't help me)

-Acupuncture   (Unfrt. didn't help me, but has helped many people with a host of different health issues. I am not sure it can help with the more serious and severe medical issues, but it won't harm you either - if done correctly hehe)

-Natural herbal therapy (helps me clear eczema flares but never really seriously helped me with my facial flushing, personally. Nevertheless, there are anti inflammatory supplements like fish oil/omega 3, flax seed, boswellia, and a host of others, which do help beat inflammation on a low level in the body.)

-3 months of oral doxycycline therapy (made my flushing and redness worse and gave me added bowel problems long term, BUT these treatments tend to work very well in fact for many people with rosacea. Trial and error, try try try, with the help and cautious eye of your medical specialist.)

-Diet changes (made a big difference for me).

-All sorts of creams, aimed at treating rosacea, or reducing redness. (The first couple of years my skin handled creams well and they helped me, I think. After about 5 years, my skin suddenly became hypersensitive to any topical and burnt. Dermatologist told me she wanted me to stop all cream experiments and leave the skin alone completely. This helped me to calm things down, and I don't use topicals anymore now, with exception of deluded jojoba oil around my eyes, mouth and forehead.)

-Red Light Therapy. I didn't give this enough time and trials, as I used it in my worst year to date, when I flushed 24/7. I have found my handheld unit back and will try it again these months, to see if by now it works better for me in reducing redness and flushing. Now that I use medication to reduce my symptoms, and now that I no longer flush from every little twitch.

-IPL. I had test patches of all sorts of lasers done over time, which didn't give me clearer results. I had read some patient reviews on the online rosacea forums about a certain Dr Patterson in England and visited him. Long story short, he didn't do test patches and I had a full face IPL treatment done in 2005, which worsened my rosacea a lot, until this day. I can't believe I just went for a full face treatment tbh. Ever since I am red and I flush all over my cheeks, whereas before the full face treatment I only flushed on the upper cheeks. Also, my general redness got worse from it and I flush a lot quicker and longer now.
Nevertheless, there were so many good results made by rosacea friends online, that I couldn't believe all laser and IPL were unsuitable for me. In the years that followed, my dermatologist in Holland and a hospital laser specialist, Dr. Leeman, tried out various laser machines on my skin, in small areas on my cheek. None of them gave any improvement and most gave me several weeks of inflammation and deep redness. He was a bit startled, as most of his patients with mild rosacea symptoms improved with his laser treatments. He thought my skin was very sensitive and basically too sensitive for laser, and my flushing problem was too severe for laser. I don't really have a lot of broken blood vessels, just a couple of tiny red dots here and there from years of flushing. But nothing clearly noticeable. And often, broken blood vessels on the skins surface as easier to treat than deep flushing, although it is possible and many people with rosacea had success with either laser or IPL, both in terms of skin redness and flushing.
I wasn't quite convinced yet by then and reckoned I just needed to see a specialist abroad (because let's face it; everything coming from abroad might sometimes seem better, when you feel desperate about something). I visited Dr. Chrouch in Swindon, UK, who was in fact very knowledgeable and extremely kind. He agreed on doing several rounds of test patches and he was very cautious. Lasers didn't make any dent in my redness but his Lumenis One IPL machine did. However, once we did a full face treatment with the same settings, it made things worse again, and I needed treatment from my local dermatologist to get the severe inflammation down in the month after. I don't think that full face treatment made matters worse in the long run, perhaps a little bit, but nothing like the first IPL round with the other English doctor did. Dr. Chrouch in the end concluded that I have extremely reactive rosacea and extremely sensitive skin. That the first IPL sries was done with the wrong machine and the wrong settings and energy, and triggered massive inflammation and new vessel growth, but that IPL in general wasn't for me, in his opinion. The only way could, potentially, be to zap small areas of my face at a time. Not a full face treatment anymore (but only because my face reacts so hysterically to the laser, normally full face is not a problem if you checked the right settings first). Unfortunately Dr. Crouch passed away recently, much too young, on September 10th 2016.

I used to be able to live more or less a normal life before. I never used a fan. Ever since, I have to have a fan on almost all the time, and I can't handle higher temperatures much. I flush at the drop of a hat, but with lifestyle adaptations I have adjusted, in order to just keep my face as pale as possible. When I'm not flushed, I have less burning sensation in my face. But my life has really changed since the IPL treatment, even more than it had already changed since my rosacea started. It's depressing, but I try to make the best of things. I walk in the evenings, long walks when there is no sun and the temperatures are down. I can meet people as long as I don't overheat myself. I can bring my flushes down with the things mentioned above (fan, cold packs, trigger avoidance), and I no longer suffer from heat and pain 24/7.


-Medication. I saw my dermatologist Prof. Tony Chu (Hammersmith Hospital, London) at the end of 2005 and he put me on a combination of 3 anti flushing medications: clonidine (0,075 mcg 3 times a day), propranolol (40 mg 3 times a day) and mirtazapine (between 20 and 30 mg a day, I started with 30 mg for some years but now reduced it to 20, as I find it helps me more at this low dose). I also take an antihistamine called Xyzal (10 mg a day). They all helped me a lot! People sometimes ask me how much it helps me, and it's hard to make percentage estimations, but I couldn't be out without a fan before and flushed literally all day and evening and night, and now I can stay unflushed as long as I stay cooled and go out and not be one hot burning mess instantly. I'd say it improved my flushing by 60% perhaps. Some months it's better than others and this summer was not good, as it was way too hot and for too long a time, but in fall and spring, with mild temperatures, it's all a lot more manageable now.  I wrote here about the medication that helps me with my rosacea symptoms.



I also tried a number of other medications, which I stopped again because they didn't help my rosacea or because they stirred my flushing further up. They help many other people with rosacea, however. This is just a personal list of what didn't help me.

I tried:
-amitriptyline
-neurontin
-Lyrica
-doxycycline
-minocycline
-azythromicin
-cetirizine
-mepacrine
-plaquenil
-mastocytosis medication; bilastine, pantoprazole and zaditine.

I use make-up very very rarely, maybe twice a year. I use La Roche Posay make-up for sensitive skin then, I wrote about it here and here.



I'm a bit gutted about it all, especially when I read success stories. I just want it to work, and get on with my life like it used to. With so many different laser and IPL machines to work with, it's very tempting to think I just haven't found the right practitioner and machine and setting yet. So, in 2011 and 2012 I gave it another shot and saw a Melbourne specialist called Dr. Goodman, who had helped a friend of mine clear his rosacea. He did two rounds of test with the V-beam perfecta, both on a lower part of my cheeks, but was also a bit doubtful about it all, and unimpressed with the test patches, which didn't show anything. For now, I decided to just settle for the status quo.. It's very unpleasant to still burn and flush at the drop of a hat and to always have to stay cool, it feels like I'm a caged polar bear in a South American zoo at times, but it has taken mostly all my time and energy and concentration in the past 17 years to find treatments and to try out things for my rosacea. It has gotten in the way of eagerness in respects to career, in the way of family, in the way of my social life. I get overwhelmed when I feel I need to keep trying new things, as I get such deteriorations so quickly, meaning bright red burned up and house ridden. For now I just stick with my medication, my lifestyle alterations. I'm in my mid-later 30's by now, 37 next month, and I just get tired from it all and spend my time on my work now and my friends and family, and reading books and writing things and traveling a bit when possible. Acceptance is hard when you haven't controlled your disease yet. And online forums and facebook groups are wonderful in terms of support and tips, but they can also show you the successes of others; success with treatments you might have already tried - and failed. It's hard to find acceptance and when I read back my old 20-something desperate forum posts I see hat most 'newbie's' have; fear, panic and searching for a solution, asap. No matter what it takes. It's hard to accept things that aren't normal, or right yet.











30 August, 2016

How to improve your chances of finding a cooperative doctor, and what to ask your doctor when you think you have rosacea.

 

A Letter to Patients With Chronic Disease

by Rob on July 14, 2010 · 488 comments

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do
to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob

Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!).  I very much appreciate the dialogue it has spawned both here and across the web.  I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here.  One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of  knowing and being known.  Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob

There are some good comments displayed here 









12 August, 2016

Niacinamide as a rosacea treatment


Niacinamide as a rosacea treatment

Some time ago, two friends with active rosacea wrote me about niacinamide, and about how taking it in tablet form seemed to curb some of their rosacea symptoms. One wrote me: 


"the Basis product has really kicked in. Last few weeks I have had far less flushing. More stable skin. There is nothing else I'm taking to attribute this to. I will mail u a bottle of these pills of NR. Nicomide Riboside. The product is Basis by Elyssium." 


The other wrote:

 I just saw a post that you are going to try oral niacinamide. I do hope it helps you. It continues to hold my face together, and in my case, along with topical niacinamide gel and oral vitamin C.
I have been taking this for about 5 weeks and it has SIGNIFICANTLY, calmed my face. PLUS, seeing my newly returned volcanic flushing has virtually disappeared, I  wonder if it has been helpful for any hormonally induced flushing too.




So what is niacinamide?


Niacinamide, also known as nicotinamide (nicotinic acid is very different from the nicotine that's used in tobacco, and plays an important part in our health), is the water-soluble, active form of vitamin B3. It is not the same as vitamin B3's other principle form, niacin (but an amide of it; niacin on the other hand can actually induce flushing for some). It has been tried and used in the field of dermatology so far, but it is still studied in that respect.

Small amounts of nicotinamide are naturally present in foods like yeast, lean meats, fish, nuts and legumes. It is also often added to cereals and other foods. Oral nicotinamide is available as 20-30 mg in many variations of multivitamine pills or on its own as inexpensive 500-mg tablets. It has also been incorportated in many topical agents including sunscreens and cosmetic agents.


You can use niacinamide both topically, in a cream, or orally for your skin. It has been reported to:

*Have anti-inflammatory properties
*Effectively treat acne by its anti-inflammatory action and reducing sebum.
*Improve skin barrier function by decreasing the amount of water that gets lost through the epidermis (the outer skin layer). The result is increased skin hydration.
*Improve the complexion, by improving the pigmentation, blotchiness and redness of ageing skin; it is used in a number of cosmetical products.
*Reduce actinic keratoses and possibly reduce the risk of skin cancer.



How does niacinamide work?

Niacinamide acts as:

*a creator of cellular energy
*a modulator of inflammatory cytokines
*an inhibitor of the nuclear enzyme poly(adenosine diphosphate-ribose [ADP]) polymerase [PARP], which plays a significant role in DNA repair, maintenance of genomic stability, and cellular response to injury including inflammation and apoptosis (cell death).


Niacinamide and tetracycline together have been shown to treat a condition called bullous pemphigoid. They can work so well together, that they're mentioned as a useful alternative to systemic steroids in the treatment of bullous pemphigoid, and also of dermatitis herpetiformis. It is less toxic and safer than dapsone and/or prednisone.


Niacinamide has also been shown to be effective in clearing acne. It is available in topical cream, gel and oral forms (e.g. trade name Nicomide). In a controlled clinical trial, 4% nicotinamide gel was found to be as effective as the topical antibiotic 1% clindamycin gel in the treatment of acne vulgaris in 76 patients with moderate acne. The study concluded that the anti-inflammatory properties of nicotinamide may have played a part in this success.
The main downside of antibiotics is that it can cause resistant microorganisms. If further research confirms that niacinamide is at least as effective as topical antibiotics, it may become a more mainstream treatment option for not only acne sufferers but also rosacea patients, as unlike antibiotics, it does not gives rise to microbial resistance.


Niacinamide also reduces facial sebum production. Sebum protects dry skin, but when you have oily skin, it can cause a shining skin and clogging of the pores, resulting in comedones (skin colored small bumps, sometimes with blackheads or whiteheads) and inflammatory acne lesions. Results of a well-controlled clinical trial in Caucasian and Japanese women have shown that application of 2% niacinamide moisturizer to the face for 4-6 weeks reduces sebum production with significant differences in facial shine and oiliness.



Niacinamide for rosacea. In at least two studies, moisturizers with added niacinamide have been shown to improve skin barrier function in rosacea patients, making the skin less prone to reactions to irritants including cleansers and cosmetics. In another small scale study, treatment with 1-methylnicotinamide (metabolite of niacinamide with known anti-inflammatory effects) resulted in improvement in 26 out of the 34 treated patients.
Niacinamide strengthens the barrier function of the skin, by stimulating the production of keratine -a protein- and ceramides -the fat molecules which help to keep the skin well functioning and firm-. As a result, the epidermis will be better at remaining hydrated, and be less prone to dryness and redness. See this article for more on this.

In this well documented research, Draelos and colleagues researched in 2005 what the effects are of a mix of 2% niacinamide in Olay Total Effects 7 visible Anti-Aging Vitamin Complex Fragrance Free cream on rosacea skin. They took a group of 50 women, of which a dermatologist confirmed that they had advanced subtype 1 or 2 rosacea, characterized by persistent redness (erythema), broke blood vessels (telangiectases), and inflammatory lesions. 79,2% of these rosacea patients saw an improvement in their skin after 2 weeks, and reported less dryness and redness of the skin. After 4 weeks 95,7% of the patients reported improvement of their symptoms. Only the broken blood vessels remained the same and didn't improve (note: for broken blood vessels, only lasers or sometimes IPL can help).

Dr. Torok, a clinical professor of dermatology at Northeastern Ohio Universities Colleges of Medicine and Pharmacy, states that niacinamide can be an effective treatment for the inflammation related to rosacea. "It has been shown to increase biosynthesis of ceramides and other stratum corneum lipids to improve the epidermal permeability barrier, and niacinamide has also demonstrated in studies a broad array of improvements in the appearance of aging facial skin."

She used a topical niacinamide formulation, CeraVe Facial Moisturizing Lotion PM (Coria). It is formulated with niacinamide, ceramides and physiologic lipids. "I have incorporated CeraVe PM for the last two months for most of my acne and rosacea patients as an add-on treatment with other topical and oral prescription products," Dr. Torok says. This product reduces the irritation and inflammation of topical retinoids and benzoyl peroxide products, according to her. "The advantage of this therapy is that patients readily will use it, as it is not an antibiotic, nor a prescription that will give them side effects. They are very receptive to this 'natural' treatment," she says.


The cause of rosacea is still unknown, but research indicates that some cases of rosacea might be worsened by factors that trigger an auto immune response in the body, and the release of cathelicidin antimicrobial peptides.







The researchers also made a comment about how rosacea patients often have dry and hyper reactive skin, with a top layer of the epidermis that isn't functioning as it should:


The facial skin of patients with rosacea is often hyperirritable compared with that of healthy patients. A variety of exogenous insults can trigger a flare-up of symptoms such as erythema, stinging, or burning. Skin care products are commonly identified as offending agents. Additionally, patients with rosacea often experience dry facial skin that can exacerbate subjective symptoms. Application of moisturizers or emollients helps to ameliorate this dryness.

The susceptibility to hyperirritability, exogenous insults, and subjective symptoms that are associated with rosacea are reminiscent of the symptomatology reported for sensitive skin. A deficient stratum corneum barrier contributes to sensitive skin, and skin sensitivity and reactivity are reportedly decreased by treatments that improve stratum corneum barrier function. Although there is no reported link between rosacea and a deficient stratum corneum barrier, the similar response pattern elicited by certain personal care products in patients with rosacea and sensitive skin suggests that individuals with rosacea also may benefit from an improved facial stratum corneum barrier. This study was conducted to assess the effect of a niacinamide-containing facial moisturizing product that improves barrier function in healthy skin on the stratum corneum barrier function of subjects with rosacea and to determine whether they may derive a clinical benefit from using this moisturizer



In other words: people with rosacea often have very reactive and easily irritated skin. Outside triggers can set it off easily, making it red, stinging and burning. Often rosacea skin is also dry, making symptoms worse, because dry skin (with not great barrier function) in itself -even without rosacea- is prone to these symptoms. It is suggested that it could help rosacea skin, if this barrier function is repaired, for instance by good moisturizers, but also with the use of niacinamide, which repairs skin barrier function as well (as described above).



Niacinamide also has anti-ageing properties. Nicotinamide has part in the creation of nicotinamide adenine dinucleotide (NAD) and nicotinamide adenine dinucleotide phosphate (NADP), which are co-enzymes that play a key role in the metabolism of glucose, cellular energy production, and synthesis of lipids. The levels of NADH / NADPH (the reduced forms of NAD and NADP) decrease with age, and topical nicotinamide appears to reverse this decline.

In multiple clinical studies, topical nicotinamide improved fine lines and wrinkles, hyperpigmented spots, red blotchiness, and skin sallowness (yellowing) as well as elasticity. One study showed nicotinamide to increase the skin's production of ceramides, which are natural emollients and skin protectants, and improving skin hydration.


Anticancer effects of nicotinamide. Ultraviolet radiation (UVR) can lead to cancer, as it directly damages skin DNA and effects on the immune system. Nicotinamide has been shown to improve the repair of direct and oxidative DNA damage in human skin. It can also prevent UV-induced immune suppression.
In a randomised controlled clinical trial in 50 patients, 1% nicotinamide gel applied twice daily to the head, forearms and hands for 6 months reduced the mean number of precancerous actinic keratoses by 28%. Another study has shown that oral nicotinamide also reduces the numbers of actinic keratoses compared to placebo. A reduction in skin cancers has also been observed in high-risk sun-damaged patients treated with nicotinamide.
Nicotinamide does not work as a sunscreen (and does not prevent sunburn). It does not have antioxidant properties, but it may affect cell energy metabolism and cell death.


Adverse effects of oral nicotinamide. Oral nicotinamide is generally well tolerated in doses under 3 g/day. It does not cause flushing or gastrointestinal upset, unlike nicotinic acid (niacine, B3 vitamin). It has been reported to increase sweating and raise blood sugar. Very high doses of nicotinamide may lead to nausea.


Niacinamide gel is marketed as an over-the-counter treatment for acne in Canada, Australia, NZ, UK, USA and Ireland. You can also purchase niacinamide powder and add it to a moisturizer of your own choice (it's a stable, soluble and safe product to use). The efficiency of niacinamide has been shown at a concentration of 2 - 5%. Sometimes the concentration in cosmetic products is only 0,5% or more. It's best to keep an eye on this. If using the cream two times a day is making your skin too dry, you can reduce it to once daily, or every other day. Nicotinamide is well tolerated and often can be used by those who cannot tolerate topical retinoids or fruit acids. Nicotinamide is not recommended for acne in pregnant and nursing women.

As a side note it could be mentioned, that niacinamide has so far limited and small scale research behind it, and that some of them are sponsored by cosmetical companies.


If you want to take niacinamide orally instead, 250mg three times daily is a good start for rosacea treatment.




One of the friends wrote me in more detail about her use of niacinamide

"I take the following niacinamide. I  purchase it from this site, iherb. I purchase most of my supplements from there as it is cheap. It is best to start out with a lower dose than the capsule. I split mine and  took 125mg then waited to see if I had adverse reactions. I developed a headache and a pressure feeling in my face. It wasn't overly pleasant, but I did not flush badly. In fact, I didn't seem to flush at all. Niacinamide is a phosphodiesterase inhibitor, which means, it tends to keep blood vessels open, but it does not dilate them abnormally. At first I feared this meant it would cause flushing, but apparently, it doesn't.

After a few days, the headache wore off and I increased my dose to 125mg, twice daily. By that time I was receiving benefits, but no side effects, barring upset gut. There could be several reasons for this, and one of them is it inhibits fungal growth. This has been shown in studies. You may recall, a poster on the forum raved about a topical gel which pushed his seb derm into remission. That is partly due to the fact niacinamide inhibits the release of fatty acids, which fuel fungal growth. Niacinamide is anti-inflammatory too.

After a few days, increased my dose again to 4 times daily. Then I changed and took a full capsule, three times daily. I space them out at 7 hours. Now that is just what I do. Other people find ONE capsule twice daily is sufficient and of course, the more someone takes the  more risks of  negative side effects. Niacinamide has very low toxicity risks, unlike niacin, BUT anything in therapeutic doses can act like a double edged sword.

There is a longevity forum where many people are taking Elysium Basis, and they are reporting all sorts of health benefits, including improvement of rosacea. That poster, Bryan has since joined our forum. Elysium Basis contains a slightly different form of niacinamide plus Pterostilbene, which among other things, has antimicrobial effects, although no one on the forum seems interested in that fact.

A poster on our forum has pushed his type two rosacea into remission, and some of his other health issues are receding. There is debate in the science world as to how niacinamide affects a certain gene called Sirtuins. Some people think niacinamide adds to aging and resveratrol slows it, but another body of scientists think it is the opposite and it is niacinamide which slows aging.

I do think the Elysium Basis product has benefits, as it addresses gut flora too, but I have a feeling that would be short term. It would get rid of a lot of bugs, but I have to wonder longer term what might happen if good guys weren't replaced? Still if it were available for international shipping I would probably try it. The downside is, it is very expensive.

If I were you, I'd opt for the plain niacinamide to see how you react, and go from there. If it didn't help you could try one of the other forms, but if it is going to help you, I think in the right dose you would see some indication. And remember, you have a severe case of flushing and LOTS of abnormal vasculature and LOTS of inflammation. You are not going to see immediate results. PLUS it is just a tool and you still need to  assist your body in other ways.

Oh, I forgot, niacinamide, MIGHT, transiently increase superficial redness, for about 20 minutes, after which the face calms down and goes paler, as it does increase circulation, but it does not cause flushing through release of nitric oxide (a bad thing). I find my topical gel  does this as well and more markedly, but pretty quickly my face calms down and over time, the  reddening effect has lessened A LOT.

I guess you can only try the NR, and see what happens. It might suit you and that would be wonderful. If not, you can always try plain niacinamide which has other benefits that NR doesn't. 
Oh and also keep in mind that oral niacinamide in very large doses alters neurotransmitters and seeing you are already taking antidepressants, you'd be better off starting at a low dose. You might experience digestive upset initially. I had to start at 100mg, or less and work my way up to 250mg, which I take three times per day, spaced at around 7 hours apart. Same for the topical gel.

By the way, niacinamide is also antimicrobial, in particular for yeast. This is one reason it his helpful topically for seb derm patients."








Some scientists which friend has talked to, take a particular interest in inflammation and hormones and some are big fans of niacinamide.

"Basically, it has helps stressed cells function better. Our faces are VERY stressed. You have noted in the past that when you gobble lots of carbs your face calms and this confuses you, given the fact it is pretty well known, a lowish carb diet if favorable to rosacea. The problem is when you gobble carbs, PARTICULARLY STARCH, you suffer the consequences, hours, or days later, as starch feeds abnormal bowel flora.
Carbs do help relieve cellular stress, but so does Niacinamide and it is also anti inflammatory and a bunch of other things.
There is  a downside, at high doses, in theory it MIGHT prevent the body from fighting an infection, but on the other hand, in very high doses, it has been shown to fight infection and viruses. So, the jury is still out on that. Meanwhile there are numerous studies and  reports by physicians/patients, that moderate dosing improves mitochondrial stress and I believe that is how it is helping me. It also helps wound repair and  improves skin barrier function.

My face looks much better and calmer now, barring the damaged areas with visible capillaries. I have been able to apply my niacinamide gel in full strength 4%, and I have seen further improvements. It isn't perfect and I start to worsen if I miss a dose of oral niacinamide, but compared to how I was previously, so far I am pleased and intend to continue. I have been running my latest experiment for about 5 weeks now and so far, I am very impressed. I feel almost certain it will help you too. Honestly, I really feel this will benefit you and the results should present quickly."





Reviews from people on The Rosacea Forum for topical niacinamide cream



Snuffleupagus wrote on May 7th 2008; "Anyone try niacinamide topically? It's supposed to be anti-inflammatory and good for redness. My derm prescribed me a cream of 4% metro. and 2% niacinamide mixed together. I hope it works!!! Antibiotics are not doing the trick yet. I get small pustules everywhere. I also tested a few spots of my face with 10% mandelic acid. No bad reaction (although I've read it could cause major dryness - I'lll limit use to a thin layer and not 2x a day). I'll have to wait and see if it does something."

Big Red replied on May 11th 2008: "I tried it, I didn't have great results. It was better than doing nothing, but what I am using now is working better for me."


J-Mill replied on May 13th 2008: "Niacinamide has tested well as an anti-inflammatory for skin with good ability to correct barrier disruption. Are you sure it isn't 2% metro + 4% niacinamide you were given? http://www.smartskincare.com/treatments/topical/niacinamide.html"

Snuffleupagus replied; "Yep that's it! My bad, I reversed the numbers. So far, no huge change on it. It's been about a week. P and p's still keep raging on."



Owenblinky wrote on December 27th 2015: "niacinamide is the most effective in topical form for treating the skin, according to my research. Unfortunately there very little products that contain 5% or more (the amount needed to see results), and the ones that do have it contain other ingredients which I don't know if I want on my skin. I would like to make my own niacinamide ointment but I am scared because if niacinamide isn't kept at a neutral PH it will badly burn your skin. I was terrible in chemistry lab in highschool, no way I trust myself not to screw it up"

TinyDancer replied on December 27th 2015: "I am using 4% prescribed by my naturopath. It's in versa base lotion. I tried the gel. But, the lotion was better. They also have a clarifying lotion. The ingredients are mostly ok. But, they do use propylene glycol. I saw serums at 5% with glycerin and hyaluronic acid on amazon."

Tom Busby replied on December 27th 2015: "Niacinamide is water soluble. Therefore niacinamide powder can be easily added to any typical commercial lotion. The base lotion must be pH 5 to 7, which again, is nearly every commercial cosmetic lotion or shower gel. For finer aesthetics, I prefer to add it at 150F so it's less waxy feeling. Proportions from 2% to 5% are equally effective in my opinion. All research is done at 5% for reasons that are never explained. Buy niacinamide powder from lotioncrafters or many other sources -- it's very inexpensive."


Sans0002 wrote on April 18th 2012: "Hey Everyone, I post from time to time on here mostly because I try to stay away from getting addicted to the site . But about a month ago I ordered this Niacinamide Cream. The ingredients are the following:
Niacinamide (4%), Purified water, Glycerol (Vegetable glycerine), Cetostearyl alcohol, Caprylic triglycerides (derived from Coconut Oil), Coconut oil, Cetomacrogol, Phenoxyethanol, Hydroxy benzoates, Grapefruit seed extract (natural preservative).
My skin has been sort of 'addicted' to La Roche Posay Toleriane for probably 5-6 years where anytime I'd ever try to switch moisturizer 'd either breakout, skin would be really red or really dry and always have to go back. I've finally broke the cycle after 1 month. The most surprising thing is that it didn't break me out and is helping some of what I think are just acne breakouts. Nothing for blackheads good or bad but still. Also honestly it's the only moisturizer that I've tried in years that I now put on during the day since it doesn't turn my skin red and actually calms it and makes it more pale. I'm going to continue to use it now and will report any changes if anything takes a turn for the worst. What I currently use is Spectro gel to cleanse and then this day and night followed by a 0.5% salicylic acid cream on my nose for black heads every three days."



Laska wrote on October 28th 2013: "Hi gang, been a long time since I was on here but I've had crazy crazy success eliminating my rosacea. I suffered subtype 2 rosacea with bad flushing along with seb derm. Rosacea is such a cruel skin disease, as you all know it strips away your personality and becomes an obsession. I'm in Australia and found a place that make niacinamide 4% cream. It has eliminated all of my seb derm and rosacea, it tightens pores and supposedly is a powerful anti aging cream as well. I've had the cream for a week and after 3 days my partner demanded to let her use it too lol. I'll try and post a pic tomorrow. I still have some broken blood vessels on my nose but I can live with that. It tingles slightly when you first put it on but is a very thin cream and soaks in and dries very quickly. If you do some research you'll see it has some amazing benefits like evening out skintone and pigmentation. I've read about some other ppl trying it on here but don't know how well it worked for them as we're all different. I read its more effective than antibiotics and being natural the bacteria can't build resistance to it. It's only been a week so hopefully it continues to keep the beast at bay. It forms a barrier on the face so triggers are less effective. Oh did i mention its cheap. Btw I didn't suffer from the permanent redness just the ugly raised patches that crack lol.
laska"

Starlite replied: "This is interesting. I've been taking 1,000 mg of niacinamide daily for over a year for depression and a side benefit I had not expected was a reversing of my gray hair. I didn't notice it but my family mentioned how it was changing back to my old color. Just thought I'd throw that in there."

Laska updated on October 31st 2013:  "hi gang, well its been 10 days since I've used niacinamide cream for rosacea/seb derm and I've yet to have a breakout of any sort. The weather in Perth is starting to warm up and its great to wake up with a fresh and non oily face. I don't suffer the redness , it clear up the spots real quick though. I suffer flushing when under pressure but haven't since using this cream, it must create a barrier of some sort. I have no scientific proof but since using it I feel as though I'm flushing but I don't get the redness, I cant explain it."


Johnabetts replied: "Niacinamide powder for cosmetic applications is obtainable in the small quantities in the UK from Aromantic In the US you can get it easily from here. It is not expensive."

Sammilynn replied: "I got tired of the gritty from the vit. B powder so yesterday I dissolved warm distilled water and let it strain through a coffee filter then put it in a small spray bottle. This worked great for me and seems to do something to the SD on my face/scalp/body. This is how I have been using the Xylitol/rose water topical for several months. I'm not mixing with creams because I have to be careful not to use oils that encourage and feed some types of yeasts. It has a tighting/drying effect on my skin with water only so others may want to try to mix it in with their creams/lotions but not me. I noticed some sores/lesions I have and sprayed last night are healing faster than the usual. I have had an extensive vit/mineral deficiency test and it's for sure I'm low on all the B's anyway so I'm sure that it helps healing too. Just the last few days I have read ton's of positive info or science studies showing the positive effect of vit. B3 as a topical for many things.

Google niacinamide or Niacin vit B3 topical for skin and you can read the good reports. Also, I have on hand several lbrands/ bottles of different types niacinamide/Niacin/B3. For my spray I just used some from every bottle. They all worked on my skin similar when I tried them out over the last few weeks, but did figure out yesterday for some reason that the Now brand non-flushing Niacin (powder/clear capsules) worked the best. All of these where inexpensive and can be picked up at the local drug store. Hope this helps someone. "


Mystica replied: "Here is a study using the topical application of NADH for treatment of two cases. One, rosacea and the other, dermatitis. The results are very encouraging. NADH is the reduced form of nicotinamide adenine dinucleotide." http://www.nadh-apotheke.eu/NADH-Studien/Topical%20application%20of%20NADH%20for%20the%20treatment%20of%20rosacea.pdf


And updated on August 1 2015: "I decided to try this gel again back in February 2015. Reason being, since the ZZ cream formula/base was changed it has never suited my skin, nor worked as well. Due to my previous reaction to the niacinamide gel, I decided to take it slowly and mix it with the ZZ 'cream'. This worked quite well, but I was still stuck in the cycle of drying the skin, followed by exfoliation, followed by increased sensitivity until my skin had dried out again. This drying process was paramount in bringing down my completely inflamed face with constant and easy flushing to a far more controlled state. When the surface is dry it acts like a brace (in me) and at least dampens superficial flushing allowing the pathways responsible for flushing to downregulate.
But I had reached the point where no further benefits were to be seen, so I wanted to try something different.
I began to use the niacinamide gel full strength on my skin and whilst I did have a similar reaction to my previous test, it wasn't quite so bad and once it had faded over 20 minutes or so, my face actually looked calmer. I was encourage to continue. Over the next week these initial reactions became less marked and only lasted about 10 minutes.
It is here that this experiment as a sole trial of one new tool became ruined, because I also added in oral niacinamide. The two together work very well for me. Sometimes it is necessary to utilize more than one tool to control a situation. The 'one tool at a time' approach to test for reactions does have limitations when it comes to health. The body is complex and nutrients work in tandem with each other. Such as vitamin D needs to be accompanied by vitamin A and K2, and so on. (As an example).
For me, I feel the gel base is just as important as the niacinamide. I could never tolerate creams.
The gel provides a dewy barrier. It goes on dewy, dries, then feels a bit tight, but after 20 minutes or so, it relaxes and has a dewy, pliable feel. I like it. It suits me. My skin barrier is much improved now.
I am not cured by any means and I can still flush badly if I don't control my regime/environment, but compared to previous times, these severe episodes are less and on a day to day basis my disease/condition is far more controlled.
Of course it has to be taken into consideration that I also follow the GAPS diet, and take several other supplements. I should also mention, I was diagnosed with Hashimoto's disease in May and given the fact Birdie also seems to benefit from niacinamide more than most here, it could be that oral niacinamide is particulalry helpful in this condition."


And: "I decided to test patch a couple of areas with the same gel that Laska has, but WITHOUT the Lipoic acid. The best and controlled areas of my face were not adversely affected. But the areas which are highly vascularized became extremely angry looking soon after applying the gel. I think one reason is, the gel is drying and while it slides nicely on to the skin, as it rapidly dries, it leaves the skin tight and uncomfortable. This contributed to a very angry look. Every visible capillary became even more prominent. However the test areas on my forehead and chin didn't react one way or the other. I could be reacting to the base, rather than the niacinamide. Or perhaps it is a bit of both with 4% being too high a dose? The gel base is not suitable for me, however and usually my skin does well in a drier state. After an hour, my face calmed down and at one point I didn't think it looked too bad, but over the 5 days or so, it has definitely become irritated.
My feeling is, those with very sensitive rosacea skins probably won't do well with this gel.
I can see those with seb derm benefiting. I can see those with very oily skins possibly benefiting.
I did a google for other products containing a 4% niacinamide gel, and found two for sale in the UK. Freedom Gel and Nicam. Reviews by acne patients were mixed, but there is definitely a large number of people with sensitive skin who simply can't use this stuff. But as I said, it could be the gel. Niacinimide does seem to increase cellular turnover and together, it could just be too much."


Lucaasalberto wrote on March 7th 2014: "I've been using niacinamide for a couple of years now between OTC products, compounded and DIY. For the last year I used at least 5% niacinamide and unfortunately saw only mild improvement in redness, texture and skin barrier/sensitivity. So I decided to try NIA24 mineral sunscreen, that has a different derivative of vitamin b3 (myristyl nicotinate, as opposed to niacinamide). I'm using myristyl nicotinate at night as well, and this seems to be working better for me than niacinamide. Niacinamide seems like a great option for those with rosacea, considering its non-irritating profile, as well as its ability to improve skin barrier and modulate inflammatory cytokines (http://www.ncbi.nlm.nih.gov/pubmed/22256624, http://www.ncbi.nlm.nih.gov/pubmed/17147561). It's worth a try, and an increasing dose as well as skin type appropriate base will enhance outcome.
I don't know a lot of products that state the amount of niacinamide, but you can estimate that Olay products like Total Effects 7-In-1 Anti-aging Moisturizer and Pro-X Deep Wrinkle Treatment have around 4% niacinamide and something like Olay Regenerist Regenerating Serum has around 2-3%.
Hope others give it a try!"


Tom Busby wrote on April 7th 2014:  "Here's a good site. This blog points out that there's no known downside to using more than 2% but most people use 2% and get results. For me, Niacinamide is a one of three topical additives that I consider were a "breakthrough" for me, in terms of healing-power. (The other two "breakthroughs" were MCT oil and climbazole.) I have seb derm induced by malassezia."


AnastasiaBeaverhausen wrote on November 16th 2006: "My derm gave me a bottle of niacinamide and wants me to take 3 tablets/day for a total of 1500mg. He said it's safer than being on antibiotics for 3 months (like some derms prescribe). He said it should combat the inflammation and any rosacea pimples."


SkincareKev wrote on July 4th 2009: "Anyone get irritation from the niacinamide in Metrogel 1%?
I can't tell if it is the active ingredient in Metrogel or the niacinamide. I have read conflicting information on niacinamide. Some says it soothes skin and others say it causes flushing. What are your experiences?"

Mutant Frog replied on July 4th 2009: "My personal experience is that it made my rosacea worse (big time, deep red flushing and irritation feeling) but made dermatitis better (under my lips, around my nose).
Go figure."

Snuffleupagus replied"really? hmm i have a cream that has niacinamide in it and I don't really notice anything. I mean right now I haven't noticed any more bonuses from using it for over a year, but when i first started noticing it my derm noticed an improvement in my permanent redness."



Kaye wrote on November 13th 2012: "I use Nia24 products (with niacinamide, SN) with fabulous results- I don’t even have to use medication on my rosecea spots when I use it. However, the Nia24 moisturizer is very expensive. I’m looking for another moisturizer that works as well but costs less."

Johnabetts replied: "Nia 24 products contain myristyl nicotinate as the active vitamin B3 component. It may be this that gives their products their special properties and an improvement over niacinamide. According to http://www.beautypedia.com/Brand/Nia24/292.aspx however there is not much advantage in the Nia 24 range over more conventional niacinamide formulations. One if the difficulties with topical niacinamide is the low bioavailability. Perhaps the myristyl nicotinate overcomes this to some extent. I know that P&G are researching to improve topical niacinamide biovailability and it is a subject of some work that I am doing myself."

Robbi768 replied: "‘Topically applied niacinamide has been shown to increase ceramide and free fatty acid levels in skin, prevent skin from losing water content, and stimulate microcirculation in the dermis. It also has a growing reputation for being able to treat an uneven skin tone and to mitigate acne and the red marks it leaves behind (known as post-inflammatory hyperpigmentation).
I use the Citrus Clear Pore & Blackhead Mask because it has these excellent ingredients for wrinkles and breakouts. Apply the Citrus Clear mask, let dry in about 10 minutes, rinse and off you go. I do it once per week, and I see results right after the first use."






Reviews from people on The Rosacea Forum for niacinamide oral pills


hg24 wrote on February 21st 2016: "My derm recently put me on niacinamide 500 mg 2x day. I don't have p+ps. Used to a few yrs ago. That cleared then I became flusher (subtype 1 rosacea). The doc originally prescribed Nicomide - a prescription supplement with niacinamide, zinc, copper, folic acid. My insurance wouldn't cover it and it was $375 with a coupon. I notice that the cream NicAzel Forte is niacinamide (in the form of Azerizin - a blend of nicotinamide, azelaic acid, quercetin and curcumin). Plus zinc/copper, folic acid and pyridoxine. I'm also taking quercetin - my idea not my derm's. Been taking it for a couple months or more.
I've read posts here on this forum, on the acne forum and elsewhere niacinamide where people have said niacinamide helped their breakouts (rosacea or acne related). Niacinamide topically has helped people, too. The doc has me taking niacinamide because of flushing on my chest, neck and ears - which I think she thinks is nerves/anxiety related. But when I flush on my face, I flush elsewhere, too.
I feel a benefit from the niacinamide - but my flushing isn't gone. It has seemed to help my evening ear flushing. But I may try adding in the pyridoxine, zinc/copper and folic acid and see if that helps.
Anyway, for those without access to Nicomide or NicAzel - you might try over the counter niacinamide 500 mg 2x day. Some people take 1500 for anxiety."



Woogie wrote on April 30th 2015: "I want to try the basis by Elysium despite the arguments that have gone on in threads but I was wondering if I could have more information on the Naicinamide and the other supplement another user was taking with it: what dosage do you take and what brand? could I please have links to figure out costs etc. I am in the UK so hopefully I can order them."


Johnabetts replied on April 30th 2015: "The important thing to note with the Basis product is that is is not marketed as a therapy for rosacea. The product is marketed as a food supplement (to overcome potential problems with the regulatory authorities. There is not mention of rosacea, or any other illness or ailment, in the marketing information on Basis."

Woogie wrote on April 30th 2015: "True but after a few others had success I have a glimmer of hope, I suppose that's the bad thing about being desperate to find anything that soothes it! I'm hopeful but after trying so much I'm also thinking it probably won't do anything, the niacinamide seems more likely to do something though with a few Rosacea people confirming they are having results. I'm looking for advice on both especially where's best to buy niacinamide and how, with anything? What dosage etc before I buy as I have no idea what it is!  Thanks for your reply!"

PaulB replied: "Greetings, The basis product's active ingredients are N/R 250mg per dose and pterostilbene 50mg per dose. There are other companies you can get these two supplements from as I don't think basis ships outside the US anyway and I think the other sources are less expensive.
It seems it helps some people and does not help others so you might like it or you might find you are wasting your money. The N/R will possibly become cheaper in the future as more people use it. The fact basis is sold out shows me there is a real market. They make no claims about rosacea and it is not what this was intended for. I did not have rosacea in mind when I started taking it.
I can't speak to niacamide at all from personal experience. Paul"


Brian_S replied on May 1st 2015: "I'd say if you are Responsive to Niacinamide for or your rosacea, then you might want to explore Nicotinamide Riboside as a more bioactive form. Niacinamide (Nam) is cheap, I buy the "Now Niacinamide 500 Mg" capsules at about $6 dollars a bottle thru Amazon and take 2000mg once per day.
Google Niacinamide Rosacea. This has already been a documented treatment for Rosacea for a very long time and is a known anti-inflammatory. There is a product by the name of Nicomide intended for skin conditions based on Nicotinamide (Nam). On the other hand Nicotinamide Riboside (NR) didn't become publicly available until 2013 where frankly I stumbled into this for joint issues and by chance noticed a change in my "Bumpy Rosacea."
Scientists in the laboratory have shown (NR) to be more potent than Nicotinamide but it is so new there has been no comparison to demonstrate its effectiveness against Rosacea. What you are reading are reports from the first human guinea pigs and we've only reported we noticed a change in our skin condition since taking it but we are not making a comparison to anything else.
David Sinclair Phd published this article in December of 2013 about his experimental use of nicotinamide mononucleotide (NMN) a NAD precursor similar to Nicotinamide Riboside (NR). The Price of (NR) went from about 17 dollar a bottle to 47 almost overnight as an anti-aging agent. The difference is (NMN) is most potent as an injection without digestive breakdown where as (NR) can be taken orally and is also absorbed thru the mucus membranes. Plus only the very wealthy could afford nicotinamide mononucleotide (NMN) anyway, its a non-starter for most of us.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4076149/
I do supplement it with some (Nam) because it is cheap and I noticed it cleared my skin up to a higher degree.
Some have reported less flushing with their Rosacea but this hasn't been my experience. It may have diminished but what I've noticed is with less skin irritation, inflammation and itching. I'm not as apt to touch my skin during my flushing episodes and this has helped me greatly. At least for me I think my condition has its roots in a autoimmune disorder which also aggravates my skin and arthritis, so reducing inflammation is paramount to me. If you have this type of Rosacea I think much of what we experience as a group is self exacerbated do to the itching we get during our flushing episodes and for me reducing my inflammation has had an unintended benefit where I'm not constantly touching my skin anymore. This is a vicious cycle that can be broken if you share a similar condition.

I take 1000mg's of (NR) in the morning and 2000mg's of (NAM) in the evening. I've reported that I've seen the affects for my skin at 250mg of (NR) but my skin wasn't why I started this regime so I pushed my dose higher for my joint problems. I should note I have not tried (NAM) alone.
I buy my (NR) on discount and will not pay retail. If cheap Niacinamide (Nam) works for you then Nicotinamide Riboside (NR) will likely work better. Hope that helps you make a decision but what ever you decide give it a month or 2 to see results."


Birdie replied on May 1st 2015:  "Thanks Bryan. This makes it even more clear of the distinction between NR and nicotinamide. I believe you are accurate that if a person reacts favorably to the nicotinamide, the NR will likely work even better. The cycle of inflammation is hard to break; but so far I'm finding the NR plus the Nicotinamide work very well in tandem together. This is new territory so I'm getting my liver enzymes checked again next week. I would rather eventually simply take the NR.
Last, from the readings I've done, it appears that people like us with autoimmune issues and inflammation react favorably to the anti- inflammatory affects of the NR and nicotinamide, thus relieving skin symptoms as well as other symptoms. It may be a good starting point for people to try the much more known product nicotinamide, see how they react, then decide about trying the NR.
How long have you been boosting in the evening with NAM at 2000 mg? To be clear for
Anyone unfamiliar with this supplement: that's a lot ! Thanks."


Paperbag replied on May 1st 2015: "Niacinamide is the non flushing version of Niacin.
http://en.wikipedia.org/wiki/Nicotinamide
http://en.wikipedia.org/wiki/Niacin
Look at the pictures of nicotinamide and niacin (nicotinic acid). You will see the only difference
Niacin has an OH group hanging off the end, Niacinamide has an NH2 group hanging off the end.
An NH2 group is an amine. In organic chemistry, when you attach an amine where an acid (OH) group used to be, you get an Amide. Hence the name, Nicotinic Amide or Nicotinamide for short.
It is the process of converting nicotinic acid (niacin) to nicotinamide that causes flushing. So if you take nicotinamide, you bypass the step that causes flushing.

My experience----
I recently jumped on the nicotinamide bandwagon too. I ordered the Now Foods cheap $6/bottle nicotinamide from Amazon. They are 500mg pills. I took one pill a day, for 2 days, and I honestly believe it prevented breakouts. I usually get 1-3 big red swollen spots on my face every single day, and I have not the past 2 days. However....I have had pretty bad, how shall I say, "digestive drama". Also, my urine is orange. So, I stopped taking the nicotinamide, and have ordered a lower dose 100mg nicotinamide pill from Amazon. I am still waiting for those to arrive. Hopefully they won't cause so much indigestion."


Brian_S replied on May 2nd 2015: "Hi Guys. First off, this stuff is expensive and I only buy it from discount offers and stock-up until the next one. I think the (NR) is superior at raising NAD levels and it gives us the secondary affects of Nicotinamide through the NAD salvage cycle. I think its all about breaking the cycle of inflammation and as I alluded the less I itch the less I touch. Both Nicotinamide (Nam) and Niagen Nicotinamide Riboside (NR) do not produce flushing like their cousin Niacin (Na) which could be maddening.

I buy the "Now brand Niacinamide 500 Mg" capsules at about 6 dollars a bottle thru Amazon. I'd start here and wait for the next discount offer on Nicotinamide Riboside unless your willing to pay retail right now. As far as the dose I'd look to the prescription medication Nicomide at 750mg of Nicotinamide per pill. and I think the dose is one or 2 per day and Birdie can comment. So that is a range of 750mg - 1500mg of (Nam) for a reference.

If your taking the Nicotinamide Riboside (NR) it can be taken at a much lower dose. I reported beneficial affects for my skin after a month at 250mg.

The affects do not come overnight and take time to accumulate. I believe the non-flushing B3 solutions are best for inflammatory skin conditions. I'll note that I would avoid straight Niacin (Na) because it induces flushing and long term at higher doses it can cause liver issues. I would adhere to the same Contraindications/Precautions as Nicomide http://www.nicomide.com/about-nicomide for the Nicotinamide (Nam) and the (NR).

The methods of action for the NAD boosters are only recently becoming understood and it would take pages to cover it. Both (Nam) and (NR) are NAD precursors. Nicotinamide adenine dinucleotide (NAD) is the energy currency used in our cellular metabolism, there are some 400 biological reactions dependent on having an adequate supply and this drops with age. Much of this understanding has come from the study of Sirtuin's and how they interrelate with our epigenome which turns on and off sections of DNA code. If your inclined there are several video lectures on the subject listed here: http://www.longecity.org/forum/topic...-6#entry725778 It doesn't hurt to have a little Biochemistry 101 to understand it but the video lectures do a great job of reducing it into bite sized pieces. Oh and all this stuff is NIH published and peer reviewed although Dr. David Sinclair sometimes lets some prepublication material escape in lecture.

These Professor's don't specifically discuss Niagen Nicotinamide Riboside but boosting NAD levels was necessary to produce the results they are citing. They started down this path following molecules like resveratrol and soon found they needed higher NAD levels to generate the desired lab results. By chance there was another group of researchers like Dr. Charles M. Brenner who stumbled into the NAD precursors and the research has merged.

Harvard Professor Dr. David Sinclair uses the NAD precursor nicotinamide mononucleotide (NMN) in his studies and it isn't commercially available. Leonard Guarente is on the Nicotinamide Riboside (NR) bandwagon and is the face behind Basis by Elysium.

So unless you have money to burn I'd start cheap and catch a discount. I bought retail for the first 60-days and later organized a group buy. To answer Birdie's question I added Nicotinamide (Nam) to my Nicotinamide Riboside (NR) regiment in November. Before that I took only the (NR) starting in January of 2014.

johnabetts, This is true, it is not marketed for Rosacea. The prudent thing to do is wait until a doctor recommends it but don't hold your breath because I've documented what Nicotinamide Riboside projects are in the wings and Rosacea doesn't rank as a life threatening disease so it might take awhile. Its only been available to the public since 2013 and before that in very expensive lab quantities. We put together a thread here http://www.longecity.org/forum/topic...s-and-updates/ pointing to where researchers are investigating and their findings have been nothing short of phenomenal in animal models. Human clinical trials are just beginning so for these will just have to wait."



Sportsfan81 wrote on April 2nd 2015: "Hi everyone, today I began taking Basis which has been taken by another member with some unexpected Rosacea benefits. I am going to take it in upon waking each morning and serving size is two pills. Currently I am taking other medications to help control my flushing and I will continue them as I do not want to risk any major flare ups. My goal is to figure out if this product has any effect on my rosacea either baseline redness or flushing. I am subtype 1 and can have some pretty nasty flushes.
I do not think major changes happen overnight so I am not going to update this every hour but rather weekly to give it time to see any benefits. If it works awesome if not I'm not too worried as I have spent much more on alternatives that never pan out. I have attached some pics of how my flushing has been, lately it has been better with medication but I still get my usual nose flushes post workout and around 4-5pm everyday.
Day 1: I took the serving size of 2 pills in the am which had no immediate effect. I took note throughout the day and I would say no difference in baseline redness or susceptibility to flush. I did not have any flushing throughout the day until I was finished working out and was sitting around 6pm. I had my normal nose flush which was pretty intense as usual.
Overall it's day 1 and I am not expecting to see any results for at least a week. I will continue to update my progress as the month goes on"


Sportsfan81 updated on April 4th 2015: "So it has been 4 days since I started and unfortunately I have not seen any benefits from taking the Basis product. I have tried to stay as routine as possible and I still have flushing under normal triggers and baseline redness has not changed.
I am going to see this through as it has not caused any negative side effects either. It's disappointing as previous user saw a 80% improvement after 4 days. Maybe it's just gonna take more time but I will continue to update."

hg24 replied: "Thanks for the update! It seems to have helped PaulB and Bryan_S with their bumps and associated inflammation. What we don't know is if it will help flushing and associated symptoms like burning and swelling. It's still early days. We're rooting for you. I ordered it today. My feeling is -If it doesn't curb my flushing, anything that helps the body run a little better and curb inflammation a bit isn't a waste of time. May not be the rosacea answer, but still good to have tried."

Sportsfan81 updated on April 4th 2015: "I agree it hasn't caused any negative side effects so it's worth a shot. It's a safer try then Mirvaso lol. About a week into this and no changes good or bad. I take it first thing in the morning before breakfast and honestly have not noticed any difference. I will continue to take on set schedule and hope to see something in a week or so. Has any other users had a different experience thus far? I am taking the recommended dosage 2 pills per day. I'm guessing that's probably 250 mg."

Wiry replied: "I haven't noticed any positive or negative effect either. Based on the posts from the other two members, they are in the early stages of actually treating rosacea. At that stage, you can get real improvement by doing a lot of things. They are also trying to be healthier, which can coincide with improvements in rosacea. I am not convinced that people who are healthy and have already been treating their rosacea properly will see any improvement. I am also not convinced this is a "good general pill". For the money and the time spent researching this stuff, I think you are going to be far healthier if you redirect that towards good diet (veggies, berries, etc.) and exercise. I do think this is worth a shot, but if members are not seeing any benefit, my opinion is that we should not encourage this direction."

PaulB replied: "FYI I noticed an improvement starting after day 4 and it was 80% better around day 17 - 20. The first thing I noticed was my skin on my face was much smoother and felt better to the touch. It was like baby soft, oily/moist but not in a bad way. Fingers crossed for you."

Johnabetts replied: "How did this product (Basis, Elysium) come to be regarded a a rosacea therapy? The product is marketed as an anti-aging food supplement and I am unable to find any references in the makers literature that points to it being a treatment for any disease whatsoever."

Sportsfan81 updated on April 27th 2015: "As I conclude my month trial of the Basis product I saw no changes in my condition after following the recommended dosage. I had normal flare ups and issues as well as good days just like any other month. I changed nothing and tried to keep my dosage times the same. I know many are still looking into other similar products but I am done with this route as I saw no improvement."

Birdie replied: "After going on line and reading reviews of different/ similar products I concluded that a majority of people who do not see/ feel any difference did bit give the product a long enough trial period. One month to change things on a cellular level is a very short amount of time. It's not cheap, and this falls into the equation. But if you can trial it for a minimum of 3-4 months, I think you have a more accurate conclusion as to whether this may help or not. Boosting the dose also seems to help people if you are comfortable with that. Best, birdie"

Wiry replied: "Personally, I would wait for the cost to come down. This a new "hot" supplement...just like many before it. Prices will come down in time and you will feel like a fool spending all that money just to get ahead of the curve by short amount of time. Besides that, I find it hard to believe you are going to respond in a nonlinear fashion (i.e. no improvement for the first month then significant improvement at 3 months). It is more likely you would see gradual improvement. If you see none after a month, I can't see a reasonable case to continue. Paul said he saw improvement at 10 days."




Mistica wrote on March 8th 2015: "I'd like to suggest supplement with the following to improve your ability to handle oxidative stress.

*Selenium
*zinc/copper (with a ratio of 10 to 15:1) Jarrows makes one.
* magnesium
(Personally I find Trace Mineral ConcenTRACE drops more helpful, as you can take smaller doses in one hit and avoid potential for flushing).
You could also try eating 15 gm of liver a couple of times per week for the vitamin A and copper.

Recently, I have been supplementing with oral niacinamide, with the idea of improving mitochondrial respiration/reducing oxidative stress. It was advised by Prof Ayers and Prof Jaminet who have been trying to help me for years. Prof Peat, (with whom I do not have personal contact), also has some ideas about this method and you can read about these here.
Oral niacinamide is new to my regime, and so far I have taken too much and too little and then arrived at what appears to be an appropriate dose... for me. I must say, so far, it looks promising.
For me, around 125mg, taken 3 to 4 times per day is helping. Too much will cause vasodilation.
Big hits cause headaches in nearly everyone and digestive disturbance.
The only other person on this board that I know of, who supplements in large doses is Birdie, who also experiences benefits. In addition, in my case, I find topical niacinamide helpful, but again, it took experimentation to find the right dose and my initial attempts were a failure. **I mix my topical niacinamide with Egozite cream (for babies). Both have been shown to improve the skin barrier.
In summary, you really need to reduce the oxidative stress in your face and I am just passing on what has been advised to me. Niacinamide is known to be anti-inflammatory, it can reduce hyperpigmentation and protect DNA, so it seems like it might be worth trying in your case, even if it might cause some transient superficial redness in the short term.

A note about polyphenols, resveratrol, etc, .. all these things lower glucose and whilst in general avoiding a diet high in carbs in recommended for us, when the body has suffered a significant trauma, it needs a good supply of glucose to assist in repair. I don't know what your diet is like, but if you avoid starches (grains, potatoes etc), like many of us do, including me, you might try adding dextrose to food, or even orange juice if you can tolerate it.







A friend wrote me: "Niacinamide is my favourite thing in the universe and topical zinc oxide. I am so pale, I've never seen it this light since Rosacea started! I take both Internal niacinamide and topical. I use about 3 teaspoons of moisturizer to one capsule of powder. It would sting at first, but then it would calm after like 5-10 minutes, but nowadays there's no stinging at all."

Another friend said: "I love it too!  I use 4 or 5 % topically. Some people use up to 6%. Is it bad to use it this high? My skin feels a lot better"

I wrote Mistica: "I am very eager to try it, Birdie sent me some, I think it's from a brand called Basis. How much should I take you think? Start with 100 mg, as you mentioned and also work up to 250 mg 3 times a day? I plan on taking it slow at first bc my skin is so hyper reactive usually. Some good reports on it on the forum :)"

Mistica replied: "The NR. Oh yes! Birdie is kind. I tried a few capsules. They made me flush badly☹ Much like NADH does☹ Alas. Yet, niacinamide, which sits in another part of the krebs cycle, suits me well. I guess you can only try the NR, and see what happens. It might suit you and that would be wonderful. If not, you can always try plain niacinamide which has other benefits that NR doesn't. I do hope it helps you. It continues to hold my face together, and in my case, along with topical niacinamide gel and oral vitamin C.
Anyway, I will keep my fingers crossed for you."

Basis contains a slightly different form of niacinamide plus Pterostilbene, which among other things, has antimicrobial effects, although no one on the forum seems interested in that fact. A poster on our forum, PaulB, has pushed his type two rosacea into remission.

There is another product called NR, which again, is the preferred form of niacinamide (perhaps preferred. I am not convinced, but perhaps). It is cheaper than Basis, as it does not contain pterostilbene. I believe you can purchase the latter separately, so it would be possible to combine the two if desired.

If I were you, I'd opt for the plain niacinamide to see how you react, and go from there. If it didn't help you could try one of the other forms, but if it is going to help you, I think in the right dose you would see some indication."




More information on niacinamide:


Should niacinamide and l-ascorbic acid be used together?

Nicotinamide riboside

Why you should take niacinamide with resveratrol

Niacinamide eases rosacea inflammation, Dermatology Times

Niacinamide, Moisturizers and the Skin Barrier Function, Rosacea Support Group

Overview of the benefits of niacinamide








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NIACINAMIDE. ORAL SUPPLEMENTATION.


Have you been following the latest thread on this topic?
Don't be put off by Wiry. He is not a medical researcher, although I briefly thought he was.

I have been taking this for about 5 weeks and it has SIGNIFICANTLY, calmed my face. PLUS, seeing my newly returned volcanic flushing has  virtually disappeared, I  wonder if it has been helpful for any hormonally induced flushing too.

As you know I do A LOT of research of my own, as well as spending much time in discussion with scientists, mostly Dr Paul Jaminet, these days.

Another scientist, Prof Ray Peat, has a particular interest in inflammation and hormones and he is a big fan of niacinamide.
Basically, it has helps stressed cells function better. Our faces are VERY stressed.
You have noted in the past that when you gobble lots of carbs your face calms and this confuses you, given the fact it is pretty well known, a lowish carb diet if favourable to  rosacea.
The problem is when you gobble carbs, PARTICULARLY STARCH, you suffer the consequences, hours, or days later, as starch feeds abnormal bowel flora.
Carbs do help relieve cellular stress, but so does Niacinamide and it is also anti inflammatory and a bunch of other things.
There is  a downside, at high doses, in theory it MIGHT prevent the body from fighting an infection, but on the other hand, in very high doses, it has been shown to fight infection and viruses.
So, the jury is still out on that. Meanwhile there are numerous studies and  reports by physicians/patients, that moderate dosing improves mitochondrial stress and I believe that is how it is helping me.
It also helps wound repair and  improves skin barrier function.

My face looks much better now, barring the brimonidine damaged areas, which have numerous visible capillaries. My upper right cheek in particular is a mess of vessels. If only they would disappear, .....:(

Now my face is much calmer, I have been able to apply my niacinamide gel in full strength 4%, and I have seen further improvements.
It isn't perfect and I start to worsen if I miss a dose of oral niacinamide, but compared to how I was previously, so far I am pleased and intend to continue.
I will have my usual blood tests for  immune function soon. Liver enyzmes included as sometimes, niacinamide can cause an elevation, but it is not considered dangerous. It goes away with a lower dose or stopping of product.

You may recall I  was using coffee/caffeine like a drug for years, to control my flushing. Caffeine used in chronic form, ( not acute usage) can  constrict blood vessels and  prevent  adenosine from causing vasodilation, but it also has negative effects including rebound flushing.
I tried many times to wean myself off coffee, but always failed, EXCEPT for this time. Niacinamide helped me make the transition with  less problems. I did have rebound and awful flushing and swelling for  about 5 days, and then things improved slowly. At about 3 to 4 weeks out, I am much better.

Typing is still a problem for me, and I can feel my face becoming pressurized, so I am going to end here. If you are interested in trying niacinamide, let me know, so I can  talk about staring at  low dose, type of product etc.

Back to your cycles. I know how much you wanted a baby, and I had hoped that one day you might be able to you, so I know how upsetting this  will be for you:(
Maybe it is just a missed period and all will return to normal?
But if not, let's hope you can offset any major flushing, in addition to what you already have now. 
I thought my face would explode at this time in my life and so far that has not happened, so fingers crossed for you too


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