From: Rdl000@_.com
Date: Wed May 16, 2001 6:33 pm
I must say that I am astonished (yes, astonished) with the impact low-dose accutane has had on reducing my rosacea symptoms.
I have had rosacea now for nearly 2.5 years. Symptoms are daily flushing and burning, always around mid-day, moderate background redness, some telangiectasia (throught to be mostly from sun damage), and relatively mild ocular rosacea characterized by bloodshot eyes. Over this time, I have tried the usual oral + topical antibiotics, antihistamines, beta blockers, TCAs, and, most recently, a 5-treatment photoderm series (using Bitter Sr protocol). None of these, including photoderm, has had anything resembling the impact that low-dose accutane has had. (See previous post for details on my photoderm experience.)
At any rate, I was quite intriqued by the discussion concerning accutane in Geoffrey’s book, in particular the fact that investigators have noted that accutane has
(1) resulted in a reduction of facial skin temperature by up to 1 degree C within 3 days of treatment,
(2) led to a 40 percent reduction in blood flow through the cheeks (as measured by laser doppler)
(3) eliminated facial burning in 18 patients within several weeks of taking accutane.
This last observation is contained in the paper: Efficacy of Low-Dose Isotretinoin in Patients With Treatment-Resistant Rosacea, (Archives of Dermatology, Vol. 134 No. 7, July 1998).
After reading this paper, I was convinced that it was worth trying another round of accutane. My derm had put me on 40-60 mg/day 6 months after I was diagnosed, and this high dosage really dried out my face, and increased the flushing and burning. I briefly tried low-dose accutane last summer, but did not pursue since I wanted to start the photoderm ASAP.
My first experiment was to initially take 40 mg/day and see what impact this would have, now that my rosacea symptoms have advanced since my initial experience nearly two years ago. I did this for 6 days, until I started to feel my face drying out, and then did not take any accutane for the following 7 days. Here is what I observed: at about day 3, the facial burning subsided quite noticeably, and I am certain this was due to the accutane. However, in the following days, as the plasma concentration of accutane increased, the burning returned, and indeed, for several days right after stopping accutane (when plasma concentration was presumably at its highest), my flushing and burning were essentially as bad as ever. Then, as the plasma concentration gradually decreased, I noticed a reduction in burning just as I had at day 3. Obvious conclusion is that there is a rather narrow range of plasma concentration that significantly reduces burning and flushing. Corollary is that typical weight-derived dosage produces concentrations that are way too high, and indeed leads to increased flushing.
So, after the 6 days at 40 mg/day, and the 7 days off, I began taking 20 mg of accutane every two days. This 10 mg/day is precisely the dosage given to the 22 participants in the study in the above reference. (These people were selected because they had rosacea for mean time of 6 years, and nothing else had worked.). I am now 20 days into this dosage, and I am seeing reduced redness each day. The daily facial burning is completely gone, and my face feels remarkably cooler even during my normal daily flush cycles. For first time in longer than I can remember, my face actually feels normal throughout the day, with maybe some slight tingling if I am concentrating really hard (my flushing appears to be sns-mediated, and flushing during mental calculation is typical of this). This dwarfs any minor improvement I had seen as result of the photoderm. The bottom line is that I am seeing exactly what had been reported in literature: a substantial cooling of the facial skin, and complete elimination of the incessant daily burning.
Two other observations: my ocular rosacea has also improved in that my eyes are much less bloodshot, presumably due to reduced flushing. And, again due to decreased flushing, my telangiectasia are much less prominent. This improvement is much more pronounced than that achieved via 5 photoderm treatments.
I strongly believe that the key is to find one’s personal “sweetspot” in terms of accutane dosage and hence corresponding plasma concentration to achieve optimal reduction of rosacea symptoms. One way is to increase dosage to point that your lips are just a little dry (nothing that can’t be contained with a good chapstick …), but face does not feel unusually dry. The weight-derived dosage that derms prescribe for cystic acne is WAY off this optimal point. Even Singer’s 1998 review paper on drug therapy for rosacea says that accutane should be administered at 0.5 mg/day per kg of body weight, which is still 35 mg/day for 150 lb individual. (Personal note: I am 6 ft 5 inches tall and weigh 200 lbs – this would be 45 mg/day for me.)
BTW, one reason I started accutane now is that my rosacea was progressing to point of getting a few bumps. Accutane stopped these immediately, as documented in above reference as well as essentially all other accutane studies. If you have any bumps when you start accutane, they will heal slower than usual since accutane, in course of shutting down sebaceous glands, does delay healing, which is why you need to be off it prior to photoderm or laser treatments.
As for accutane side effects, my take is that these are only an issue at standard dosages, except that it is very clear that women must never get pregnant on ANY dose of accutane. A leading rosacea researcher even mentioned to me in a private communication that he does not do usual blood work at low dosages, and indeed feels long-term, low-dose accutane treatment is safer than long-term use of systemic antibiotics. I plan to continue current regimen for at least 6 months, and possibly a year depending how it goes. There is evidence that symptoms remain in remission after accutane is stopped.
Accutane is indeed an astonishingly effective drug for treating nearly all rosacea symptoms. (Its effectiveness on acne is why the Am Derm Society has fought the FDA’s attempts to much more tightly regulate accutane prescriptions.) In the final analysis, it is the only thing that has produced significant improvement for me. As Heidi has observed, it may be difficult to convince your derm to prescribe accutane if you are woman of child-bearing age, particulary if your symptoms are relatively mild. In this case, you may have to agree to do standard oral antibiotics + Noritate for a couple of months before derm agrees to accutane. But you might have some success in this argument if you show your derm the above paper, and argue that side effects (with obvious exception of impact on pregnancy) at this low dosage are MUCH reduced relative to those reported at the much higher dosages (up to 100 mg/day) for acne treatment.
Rick
From: Rdl000@_.com
Date: Thu May 17, 2001 4:06 am
Subject: Re: Dramatic results with accutaneHi,Although isotretinoin (accutane) and tretinoin (e.g. Retina-A) are similar chemically, tropical tretinoin is strictly off-limits for rosaceans because it increases erythema and accelerates formation of telangiectasias. You may be referring to the article by Ertl etal, which was roundly criticized by Wilkin for the above reasons.
Rick
From: Rdl000@_.com
Date: Thu May 17, 2001 2:08 am
Subject: Re: Dramatic results with accutane
Jim,
Actually, I think low-dose accutane, tuned to individual response, is likely to help a very large number of resistant cases.A major trigger for me is daily stress, not so much from meetings and presentations, but just working hard in my office. I still feel a flush kind of coming on, but (a) my face feels MUCH cooler to touch, and (b) if I look in mirror, I am amazed at how little red I am showing even though my system is “trying to flush”.Probably my biggest trigger is driving home in car after full day of skiing in cold Northeast. Too late in year to test that one, but I have wondered myself if it will mitigate this as well. I think there is a chance, given points in my original post concerning lower facial temperatures and reduced facial blood flow as result of accutane.Related comment: if I am in cynical mood about photoderm (which I am), why is it that photoderm “researchers” (term used loosely here) have never published laser doppler measurements of facial blood flow to document claims of reduced flushing after photoderm? Peter Drummond, who studies sns-mediated flushing, routinely uses this technique, as did the authors of the aforementioned study on accutane.
Best,
Rick
— In rosacea-support@_.> wrote:
Hi Rick,
Thanks for relating this. It is likely to help some members. When you are on the low dose accutane, how do your flushing symptoms respond when you are exposed to such triggers as exercise and heat?
Sincerely,
Jim
Related Articles:
- long term accutane experience from Rick
- focus on low-dose accutane
- long term extra low dose accutane
- accutane and pregnancy
- accutane and matrix metalloproteinases (MMP)
- treating rhinophyma with accutane (roaccutane, isotretinoin)
- Accutane moisturizer sunscreen
- Rosacea & Accutane Roaccutane Low-Dose May Clear Resistant Rosacea
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10 comments ↓
hi, i just started getting rosacea this past summer. It sucks!!! I dont go out with my friends so i just stay home. I feel sooo ugly!!! my face is also extreamly oily and so I live on those oil absorber sheets. Ive been getting acne like crazy too. I go to a new derm on Jan 17th and I am going to beg him to put me on accutane. I am so nervis that he will say NO and want to try this, that and other things… please keep your fingers crossed for me!!! WHY US?????
Hi Jo, all the best for your visit ! You might like to take some of the articles from the following link to your doctor. They are the best low-dose accutane papers that I can find.
http://rosacea-support.org/focus-on-low-dose-accutane.html
davidp.
I have lived in several countries while working as a model. But with rosacea it has directly affected my earning ability and mental stability It usually takes 3 doctors before I can convince one to put me on a low dosage of accutane (usa), roaccutane (europe). I go through the same stories, present photos and shed tears in desperation to avoid going through all the topical and oral perspcriptions they give before they finally give up and turn to what has been the only thing to help. Top dermatologists worldwide have doubted and blatantly denied that this could help me, until after all the anitbiotics, lotions, allergy tests and steroids yield no result. Takes about 1 month to show them what I’ve been saying all this time. After moving to the UK I had to go through it all over again. For one year I have lost jobs, shed tears, and resorted to anti-depresants because my life is so affected by this. finally I have started again my first pill yesterday after all their remedies failed. I will be normal again. But how is is that no one has taught doctors how well accutane and roaccutane can help. I have been on low dosage for 15 years (on and off depending on if I’ve moved and have to convince someone to please put me back on) Sure I’d prefer not to have to take it. but the eczema, and acne and flushing, and scaling and investment of hundreds of dollars only make life impossible with out it. I wish you good luck. I have to be one longest users of accutane/roaccutane going on 16 years. I have thins skin, the palest of the pale and red hair. It comes with the package. I take 20mg every other day or every 3rd day here in Uk and 10 every other or 2nd day in usa. after months i have even been able to control the symptoms of papules, acne, eczema, intensely hot flushing, broken blood vessels, swollen and sensitive scaling by only taking 20 mg once a week.
i was on roaccutane 11 years ago, and now after having rosacea symptoms, red face cheeks, nose and ears, im going to go to my doctor and ask to go back on a low dosage after reading your posts. Hope it works, thanks for your help.
I’m sure it will. I’ve been off now for 3 months to prepare for an operation, and already all the bumps and broken blood vessels and hives, and itching, and red flushes have come back. I can’t wait to go back on. I have convinced many a major dermatologist that this works. They didn’t believe me (on example was a particularly famous professor at chelsea hospital in london) now he does. And he helped me for the last 2 years. I’m so grateful for it. But then when you have to go off if you want children or in my case an operation (because it impairs healing) you realize, there’s got to be something better less dangerous out there. good luck!
I’m curious to know if anyone else has tried vitamin A supplements? I am currently taking a cheap vitamin A supplement and the results have been very promising. Significantly less redness, soreness and bumps, a family member actually commented that I looked pale!
Hi
I’ve had rosacea for about 3 years now, albeit in its mild form. I started developing it at the same time as i found out that I was HIV positive. Some doctors have said that this may be linked – although a lot of doctors have said many different things – but the last dermatologist i saw told me there was no link. I am completely at ease with being HIV positive but my rosacea, which although being mild, nonetheless, occupies my thoughts nearly every waking hour.
Ive recently moved to south america where the hot son and climate seems to have aggravated the condition, or caused it to flare up more.
I went and saw a dermatologist who has proscribed the following:
Cetaphil, gentle cleansing bar
Bioderma Sensibio DS
Umbrella emulsion en spray – a sunblock.
The derm told me to wash my face twice a day with the soap and to then apply the Sensibio DS cream and before I went out to use sunblock.
She mentioned to me the use of roaccutane but said that as my condition was so mild, she first wanted to try these other medications.
I do feel as if the Cetaphil has helped and am glad she prescribed it. The Bioderma Sensibio DS and the suncream seem not to be so effective..
Amazingly after going to a number of top clinicians in the UK, it was not until I reached Venezuela that my condition has definitively been classified as Rosacea. Now that I know I have it, I obviously have a number of questions that if anyone could answer,I would greatly appreciate.
I am considering asking to be put on to the roaccutane, but as my condition is mild, is this the right move? I have a constantly pink / red nose and cheeks and some blood vessels on my cheeks are visible. God I would love so much for my face to turn back to normal and if the above treatment would give me the chance of doing that, then I wouldn’t hesitate to take it up.
Does this condition mean that holidays in the sun are, to an extent, off limit? Obviously, moving on from that, I am now starting to reconsider my choice of coming to live in a place with as much sun as Venezuela. Perhaps, for a person with the condition of Rosacea, this was the wrong decision.
The main trigger for me is drinking beer. This usually happens on a friday night when I go out, and seeing a mist of red descend down upon my face breaks my heart. Vanity is an awful thing, but rosacea seems to create a vicious circle which debilitates my ability or resolve to get out myself. If I really want to fight this disease, does that mean Im going to have to give up drinking beer? That really would be an extremely difficult lifestyle choice to take. Have other people taken this step? I would be interested to know. Are there other types of alcohol which are less inflammatory – wines or spirits? I have stopped taking cocaine as I’m fairly sure this was quite a large trigger, and anyway after the initial lure of the cheap price and high quality, i realized that this wasn’t really something I wanted to do. Giving up smoking – should this be done? And finally exercise, does this help keep the condition at bay?
My final question is when people talk of remission does this ever mean a complete disappearance of the cosmetic symptoms? I apologize for the slightly incoherent and self-centered nature of my post, but would really appreciate any answers or comments from anyone here. As I have said, my condition is not particularly severe, and knowledge of this definitely make me question the magnitude of my own vanity, especially when compared to the difficulties some other sufferers are facing. To those people, my heart really does go out to you, and I strongly prey for you having as much success as possible in fighting this.
Hi Tom,
I know how you feel when you say it occupies your thoughts every waking hour. It makes me very depressed when I have a bad flare up, but I often feel better about it when I’ve got it under control.
The doxycycline (antibiotics) have been the biggest help for me, but recently as mentioned earlier, vitamin A tablets have improved things even more. To the point where I have very few pimples at all.
Exercise
- Walking doesn’t hurt for me, as long as it’s not in the sun. I try to go early in the morning or at night and wear a hat in the day.
- Running unfortunately aggravates my condition.
Alcohol
- Beer sometimes makes me flush, but sometimes it’s OK. I haven’t worked out why yet. Maybe it’s the type of beer. I haven’t stopped drinking beer, but I try not to drink it too often.
- Wine seems to make me flush badly, so I’ve given up drinking it =(.
Sun
- This is one of the worst things to deal with I think. Although everyone suggests sunscreen, I can’t wear it. It always makes my skin worse. I have tried the zinc sunscreen for sensitive skin but that’s no good either. I just wear a hat if I know i’m going to be in the sun and if not, I try to walk on the shady side of the road.
Accutane
- I was on this about 10 years ago when I had acne. It has some nasty side affects but I was on a high dose.
Non-medicated products
- For a face wash I use Olay gentle foaming face wash with aloe and it has been fantastic for me. Very mild and I can use it twice a day.
- For a moisturizer I use Neutrogena Oil-Free Moisture (sensitive skin). It works better than any other for me, but I still find that any kind of moisturizer or sun screen every day causes problems.
The first thing I would ask for if I were you is doxycycline.
Good luck!
Stuart
I’ve tried every anti-biotic including doxycycline, (and have a drawer full of hundreds of dollars worth of products that didn’t work, but since my condition is not from bacteria, it did nothing. in fact i broke out in a terrible rash around my mouth from the doxycycline. all i can say is i wasted a lot of time and money and tears before i finally convinced doctors that roaccutane the only thing that works for me. after my recent operation because I had to stop the roaccutane (in Europe) – (accutane in the US) i started of course to break out in flushes, papules, and rashes. I began thinking, “what did i just eat, what did i just do, what am i allergic to.” But that always leads to nowhere and i just started back on a very low dose of 3 a week and looked in the mirror and thought, wow why is my skin looking so good…but it’s the roaccutane. btw, i don’t use any cosmetics on my face with perfumes or that aren’t hypoallergenic, i don’t use any lotions with perfumes or chemicals – i used to use Eucerine, but the doctor told me that it contains uric acid which can play havoc on my thin delicate skin. so he prescribed a wonderful lotion called doublebase. and i of course use protopic when i have flair ups which works wonders! aveeno soap is best for me without sulfites or uric acid and if you get the kind with pink cap – it has fever few to calm redness. good luck!
Hi, i have suffered from acne ever since i was 11 and at that time i was the only one in my class with acne. it killed my social skills and it is still killing it now. i don’t go out much im so ashamed of my acne. i know i’m a beautiful 18 year old girl behind this acne but i just need it to go away so i could live my life and be a normal person. there are so many things i should be doing at this time and i can’t because of my acne. it has taken all over my life i can’t face myself at the mirror i hate mirrors i don’t know if anyone out there is like me but i want to go on accutane i have literally tried EVERYTHING. I HAVE a dermotolgy appointment tomorrow. i hope he’ll be able to prescribe accutane.. ifhe does i’d prolly be the happiest person in the world! will let you know what happens throughout my journey with accutane (if he prescribes it)
Pray for me
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