Dramatic Results with Low Dose Accutane

Written by on August 24, 2007 in Accutane and Roaccutane, Acne Treatments with 64 Comments

roaccutane

Following is some insightful comments from a well known and respected member of the online rosacea community, Rick.

The use of low doses of accutane to treat rosacea is a little controversial; firstly the drug is strictly controlled because of its negative side effects and secondly because high doses of accutane can worsen or induce rosacea like symptoms in some patients.

Always good to read some real world experiences from someone who has tried accutane and found a dosage and regime that worked for them.

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 accutane
Hi,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

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About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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64 Reader Comments

  1. jo says:

    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?????

    • Laura says:

      Hi Jo! 🙂
      How are you? I could really relate to your post. I have developed rosacea over the last 7 months after coming off an SSRI (weird, right?! Crazy what drugs can do to your body) Anyway, I have the pustular and ocular form of rosacea and when my face is bumpy I don’t want to leave the house or see my friends. My term thinks I have something called “neurogenic rosacea” –my face burns and stings constantly. It never goes away. My docs have my on high dose neurontin but that does not take the pain away, it just blunts it. It’s pretty depressing.This is quite a debilitating disease. So I am looking into low dose accutane for both the burning and stinging and the breakouts. Did you ever go on accutane? How are you doing?
      Laura

  2. 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.

  3. mandy says:

    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.

  4. ben says:

    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. 🙂

  5. mandy says:

    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!

  6. Stuart says:

    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!

  7. Tom says:

    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.

  8. Stuart says:

    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

  9. mandy says:

    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!

  10. rash91 says:

    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

  11. shantelle says:

    I was on low dose accutane (Isotane in NZ) for 2.5 years for severe acne (1x 10mg per week). I had to STOP the regimine due to a sudden severe flushing issue that developed this summer. 2 months off it, and i’m still having MAJOR issues. Derm has put me on Roxithromycin to help inflammation (Macrolide)- helping somewhat but i’m still VERY temperature sensitive and i’m 100% ceratin the long-term use of Isotane induced Rosacea (as i did have some trouble at the start of treatment until dosage was lowered). I wish i’d never started the drug now- I can’t even exercise or eat warm dinners… and Alcaholic beverages is an absolute no no. I didn’t have any issue with flushing before I started the Isotane/Accutane medication. I would not recommend to anyone wo is thinking of long-term usage.

  12. marie says:

    I have managed to keep my acne under control with 20mg of accutane a week. But each time I take it, I am concerned about what I’m doing to my body over the long term. I often feel joint stiffness and my feet may hurt in the bones. My blood levels are normal although my cholesterol seems high given my weight and diet. And, every time I get a sour stomach – I get nervous that I might be getting irritable bowel syndrome. Have any of you had any of these experiences over the long term use. I have used off and on over 15+ years. I am a 53 yo black female.

    Historically: I did a full course for 6 months and went into remission for 10 years – no acne. Then I did another course but it didn’t work so I kept reducing the amount and time frame until I figured out that 20mg a week would actually work. When I stopped, within 2 weeks, the acne would start up again, and the acne scars on black skin are almost worse than the acne itself because they take months to fade. So I need to go back on again. Does anyone have any comments about side effects when using over the long term (impact on skin, bones, hair, liver, etc.). Any feedback you can give on side effects with low dose accutane would be extremely helpful. Thanks.

  13. shantelle says:

    Just thought i’d update:
    This yr post isotretinoin I have been offically diagnosed with both Lupus and Rosacea type 1. Who would have thought a prescription for acne could have lead to this… I think isotretinoin has the ability to alter the autoimmune system. In fact, to this day they don’t really know how it works or can affect the body long-term. Please be very cautious of taking this med long term even at low dose like I did. If any strange side effects emerge- please reconsider getting off isotretinoin altogether. I know it helps some people, but there are more and more links to lupus emerging on the internet and I believe in some people it can trigger of an autoimmune reaction. who would have thought a prescription for acne would lead me down this path…
    Best, Shantelle

  14. mandy says:

    Dear Shantelle, Firstly I want to say I’m so sorry that you are going through such discomfort and hardship. But cause and effect is a delicate and crucial piece of information to consider. Until something has been proven that you got lupus from Accutane, I would be really careful for your own good and the good of others when implying that a prescription for acne would trigger an autoimmune reaction. Of course it’s wonderful of you to share your experience it helps everyone make a wiser decision. but I worry about the people who would read this and live a terrible 5 or 10 or even 1 year with acne or rosacea when accutane can change their life for the better. i personally needed it and it helped me so much throughout the years that I would never have been able to be happy without it, not to mention made a living as a model to pay for university. 1 drug lead me down that path. But I do really hope you get better. And in the meantime thank you for bringing it to our attention. I will definitely research this. But I’ve taken it for 15 years, but you never know. Better to be safe and informed than sorry.

    • Laura says:

      Hello Mandy, 🙂
      I truly enjoy reading your posts—they are incredibly informative and helpful. I developed rosacea in the last 7 months just after stopping an SSRI (crazy right?!?) Anyway, my symptoms continue to progress and get worse. Also, ever since this started my skin has become extremely sensitive (can only wash face with water) so it makes it difficult to treat. I have the pustular/ocular and burning and stinging aspects of rosacea and they sure stink!!! I am on doxycycline which helps very little and my term just gave me finacea which Im trying to use but since my skin is so sensitive I have to be careful. So I am looking into low dose accutane (10mg a day.) How are you doing? Do you think you could email me sometime? I would love to pick your brain.
      Thanks again for all your great posts,
      Laura :o)

  15. jeff says:

    hey mandy, do you have an email i can write you at?

  16. mandy says:

    Hi jeff, can you post here your email and I’ll write to you. Thank you.

  17. Ivan says:

    Let me begin by saying that low-dose Accutane has had a miraculous effect upon my Rosacea. I have suffered from severe papulo-pustular Rosacea for 40 years. About ten years ago it became increasingly aggressive – to the point where I basically went into hiding while searching for a solution. I heard about the Accutane approach about five years ago and convinced my dermatologist to give it a try. The results were, like I said, miraculous. Nearly every trace of the condition disappeared within four weeks and my skin has remained clear ever since.

    This treatment gave me a new lease on life. The trouble is that every time I require a prescription refill I must jump through hoops. The first year, my dermatologist retired, so I had to find another one. The next year, that dermatologist retired so I had to find yet another. The next year I moved to a different state. The next year I moved again. This year, I have the same dermatologist but now the pharmacy I’ve been using declines to fill the prescription. I’m sure I’ll figure out how to get past this barrier as well but it is ridiculous that a treatment this safe and effective is not completely mainstream.

    Every dermatologist I’ve seen is skeptical at first. Each one has never heard of this approach. How is this possible?

    Restrictions on the use of Accutane are legitimately relevant to pregnant women but everyone else gets treated the same way. If any dermatologists are reading this, please heed what we say here. Low-dose Accutane works superbly well. It is, in fact, the only treatment that has ever worked for me for any length of time. I have been on it for five years with absolutely no adverse effects. I expect to be on it for the rest of my life. That is fine with me. The thought of going back to the life I once lived as a Rosacea sufferer is too painful to contemplate.

    Perhaps there are cases that don’t respond. I am a 63-year old male with severe papulo-pustular Rosacea. All I can say is that it works for me and does so superbly well. I am scarred for life because of the past effects of this condition but the shame and trauma are all behind me now (I hope).

    Please. Anybody out there with influence in the medical community, listen to what we are saying. This stuff works. Check it out. Do some trials. Too many people are suffering needlessly.

    And to the pontificators who denounce this treatment without first-hand experience I say, give it a rest. Let the rest of us try it for ourselves. Nobody is benefiting personally or financially by promoting this treatment.

    Just for the record, the dose that works for me is one 40mg cap once a week. I am male and I weigh 200 pounds. I must also watch my diet to avoid known Rosacea triggers but, other than that, I can now live a normal life.

  18. mandy says:

    Dear Ivan, Thank you so much for your well written, heartfelt and thoughtful letter. It is really true what you say. I felt the same for so many years – lost a lot of time and tons of money being forced to try every other possible remedy. I’m sorry it took you so long to get help. I wish we could change how skeptical and sometimes resentful doctors are in giving a low dose accutane. And in the world of lawsuits, it’s no surprise. But you did your part. And I believe all of us can help change suffering for rosacea sufferers throughout the world.

  19. Peter H says:

    My low dose accutane inputs are on another part of this great support group (‘treating rhinophyma with accutane’) but I believe Mandy is very right in stating most doctors being very sceptical about accutane in general and low dose in specific.

    Therefore I would advise anyone who wants to convince his or her dermatologist: be armed with a number of worldwide research studies in the efficacy of low dose accutane therapies for certain Acne and Rosacea conditions. Consult official reasearch databases like ‘Pubmed’ and ‘Medscape’ (David Pascoe published a lot of these studies on this site) for all the ammunition you will need to create a portfolio for your Dermatologist. Be prepared for apathy from your Derm over internet research so let them know that you have legitimate studies from real government reporting sites done by actual researchers.

    I did it with my dermatologist, she is opend minded and preparted to listen, and so far low dose has worked miracles for me but please remember: all drugs affect people differently!

    Best wishes,
    Peter

  20. Bjask says:

    I have been off and on low dose accutane for 1,5 years now. Every 5 months I have had 2 months off, and when the problems return, I go back on. I am not sure if I should stay on it continious instead of going on and off. In total I have been taking 2200mg so far. But the first time I was on 20mg a day for a couple of months.

    It is good to see that I am not alone in this accutane regime. I have some worries with long term side effects, but when some people manage 3 and 4 full courses for acne, I should survive this low dose regime for some time.

    After 16 years with these problems (I am 34 now), it is simply fantastic to feel I have control, to have a nice girlfriend and be able to go out with her without feeling shame. In my 20ths I stayed home after work or studies, and became antisocial. If I knew what low dose accutane can do, I would have taken it years ago.

    Thank you Mandy and others for telling your stories. It gives me hope, and relief from pessimistic thoughts.

    Regards
    Bjask

  21. mandy says:

    Thank YOU Bjask, for being so candid. Many people look at the negative side effects of the drug — and they should, but I think with balance. Because the negative side effects of depression, loneliness, or inability to experience life’s opportunities are just as dangerous. If only I could have found this site 10 years ago or even 5 or 2 when I had to plead with so many doctors to give me the drug. I would have bought it from the black market if I could have. No one believed me, because no one reported similar experiences. Good Luck!

  22. Sebastian says:

    I must say after reading all this i was very touched. To know that there is something out there (accutane) that can help rosacea. I want to thank you all for sharing your stories and i can really feel with you all. Ivan after that beautiful letter only thing i want to say to you are..You are my hero. I am glad for you that the shame and trauma is no longer in you as it is in me. Even though i am still young (20 years) im in a way desperate sometimes thinking thoughts that i know arent normal for a person to think unless you are very dipressed. Now i am asking you here to please read my short story im about to write and give your opinion.

    15 years i started partying drinking alcohol every weekend. 3 years later now on 18years i changed my living by starting to excersise 3-4 times a week for about 1 year. Now when i look back i remember i became red and flushed when i was out running or doing pushups at home( but nothing i noticed then). still i went out now and then. 6 month later i started lifting weight 5 days a week and now dident go out as much since alcohol wasent good for my training and my redneed started to get more clear on my cheeks so i started get more imberresed to go out. Now i am 20 and training is my passion i am gonna study next year which includes things about training. evertytime i train my face becomes very red and stays so for a long time sometimes so long even after shower. And almost forgot i been taking whey protein for about 1 and a half year and alot of dairy products but since i been told dairy arent good i eliminate all kinds of dairy ony my diet except my whey protein and a milk here and there.

    So my question are following

    1. could my training be a big part of why i got rosacea in the first place?
    2. i been on mild anitbiotica before 10mg (Dalacin) do you think Tetracyl could help me? Since ive oly taking dalacin maybe my doctor wont give me accutane but put me on other stuffs first.
    3. Here where i am from sweden a guy killed himself after using accutane was all over the news. And i read about the side effects and it scares me. How big is the chance for getting one of this many sideeffects?

  23. mandy says:

    1) you’re training is not why you got rosacea
    2) if you tried it and it works then great. If it doesn’t then change doctors!
    3) Honey stats are that people unfortunately kill themselves everyday. Some on Anti-depressants, some who have the finest food, diet superstars, and doctors the world has to offer and some on roaccutane. It is only my belief that accutane/roaccutane saved people’s lives as well. Make a wise and studied decision before taking it. But for myself, my family, friends and colleagues this was a miracle worth fighting for. I lost a lot of life in misery over my skin without accutane. Be under constant supervision by a doctor who is young and active in current research. If you’re feeling unusually depressed tell your doctor immediately. I wish you good luck. You are intelligent to ask these questions. So I know you’ll be fine.

  24. Sebastian says:

    True that. i will do a deep reaserch on accutane. Just curious how much did this help you? was your rosacea after using accutane noticble? And by your personal experiounce did no other antibiotics helped you att all or did they help some but not as much as accutane? i have not server rosacea but just enough to make me imberresed by it and thats why i maybe should give other antibiotics a try before asking for accutane. And btw saw you been on it for 16 years have you had any sideeffects from this? Bealive it or not i am happy for your sake now that u can control the symptons.

  25. Mandy says:

    Dear Sebastian,
    I only have a moment to write, but I was a model full time. When I lived in miami I had to the dermatologist and get cortisone injections it was so bad, I have scars still from that. I lost a lot of jobs, I constantly looked like I had sunburn, I spent hours before going out or shoots trying to cover things up with a paint brush and makeup, I spent hundreds of dollars on everything over the counter that was supposed to work, I took every supplement available, I slept, i stayed away from the sun, I stayed away from alcohol, but it was terrible. I felt horribly depressed. I took every oral and topical antibiotic that is available and nothing helped me. I spent huge sums on doctors visits to test against food allergies. I had no side effects thus far. Nothing but accutane helped me. The same for my sister, the same for my cousin. Now I work for a modeling agency. And the girls go through the same crap…trying every antibiotic out there, wasting life, years until finally they listened to my urges to use accutane. Once 3 of them did, it cured them. Rosacea will most likely always be with you, but without it for me the blood vessels in my face because so dilated in my nose that it bled when I used tissues.Good Luck.

  26. Sebastian says:

    Thx for the feedback. Just spoke to my new derm i was send to but he will not receive me untill late of August=/ Anyways i called and reserved a private derm today and luckly some1 had cancelled there visit and i get a appointment at 4 th july. In the website there are saying that one of there normal way to treat rosacea is with laser. And this is what a friend wrote to me over the internet

    “The problem with using lasers is that although it may reduce the blood vessels, it does not solve the underlying problem with Rosacea, which is thinning skin and inflamed pores. Lasers could actually damage the skin more, and make the skin thinner than it already it. It is a quick fix, but can make the problem worse and may cause scarring and hypigmentation, especially in olive skinned and darker skinned people.”

    if he offers me laser i feel like rejecting it. should i?. I will also show him the paper above about low dose of accutane. Just out of curiousity Low dose of accutane 10mg/day should minimize the chance of having any side effect instead of a higher dose right?

  27. Some responses from Ivan via email:

    —————

    Sebastian,

    Sorry for the delayed response. I don’t check this email account very often.

    I do not believe that exercise can cause Rosacea. I understand it to be a genetic problem. You are born with it. I also do not believe that alcohol will cause Rosacea although it can worsen an already existing condition.

    Antibiotics can help with certain types of Rosacea but there are many different varieties – at least three major types according to one of my former dermatologists. The type that I have is called Papulopustular Rosacea and it resembles common acne. It flared up when I was 19 years old and steadily worsened over the years. Antibiotics helped a lot but I became resistant to all of the various types of antibiotics very quickly and there were unpleasant side effects.

    The dose of Accutane that I take is so small that it has no side effects at all. I had very severe side effects with antibiotics. None with Accutane but, as I said, my dose is very small – only 40mg per week in a single capsule. The standard dose of Accutane for the treatment of acne is very large and could, perhaps, cause side effects such as the one you mention.

    Ivan

    —————-

    Sebastian,

    My Rosacea is still somewhat noticeable. My skin gets red very quickly and I blush too easily. My skin can break out if I eat the wrong foods but as soon as I go back to a safe diet the problems go away.

    The improvement with Accutane was the difference between night and day. I can now live a completely normal life. I have been on Accutane for about 6 years, not 16 years. I have noticed absolutely no side effects from the Accutane but my dose is very, very small.

    I answered the antibiotics question in an earlier message.

    Ivan

    —————

    Sebastian,

    I don’t know anything about laser treatments so I can’t comment about that.

    A dose of 10 mg per day would probably be more than you need. I take 40mg per week and I’ve heard of people who can get by with 30mg per week. In the United States, Accutane commonly comes in 40mg capsules so taking that amount is convenient.

    Good luck.

    Ivan

  28. shantelle says:

    Sebastian,

    Vbeam laser can significantly help reduce flushing, broken capillaries, and base redness for Rosaceans with these key symptoms. I have had 2 non-purpuric/non-bruising vbeam treatments and I can tell you without a dout, the treatments may be expensive, but they are worth every penny.

    Non-purpuric vbeam laser treatments done by a skilled, reputable laser Dermatologist has a next to zero risk of hyperpigmentation and scarring. In fact, the laser is used to help reduce the appearance of scars (or anything red for that matter). The Candela Vbeam Perfecta laser has a patented cooling spray which protects the skin from injury, so that only the blood vessels under the surface of the skin are targeted and then absorbed during the natural healing process (can take up to 12 weeks post-treatment for the process to be complete).

    There is also the option of getting purpuric/bruising vbeam laser treatments, however with latest vbeam lasers and effective non-purpuric veam laser technology, my Derm advisesthat the purpuric/aggressive treatments are now only generally reserved for very red areas such as portwine stains or scarring, rather than Rosacea.

    Vbeam treatments are excellent, and I would highly recommend them to any other Rosacean for the symptoms outlined above. There are reviews on rosaceagroup.org that you may like to read.

    Best, Shantelle

  29. helene says:

    I’ve had rosacea symptoms for about 10 years. Symotoms would disappear for months or years, but it just recently advanced to a point where there is no remission, and symptoms of redness, flushing and bumps are persistent depending on triggers. Currently on both oral and topical antibiotic regime, but I find it minimally effective, and am worried of the lasting damage each outbreak causes. Have had two laser treatments (IPL) for redness ( will see how that goes- some reduction of redness already) Very interested in Accutane as treatment option, and after reading above, see that it appears to be very beneficial for most who have tried it on a low dose. But I would like to know if the improvement is seen and remains after stopping treatment, or if it is more of a maintenace therapy that never stops- and once it does symptoms return…
    Good luck to you all- I know how frustrating it can be!
    helene

  30. Mandy says:

    Dear Helene,
    I know what you’re saying. Been there. I tried all the above with no results except for low-dose accutane on and off for about 20 years around the world and protopic ointment. IPL is a temporary fix IF it works and super expensive. I found that when I did a serious bout of accutane taking everyday I would be so so so much better for almost a year later or more without any maintenance. For some people like my sister and cousin, they were cured once they took the full 3 or 5 month session and have not had to return to it for the last 10years. Before that, they suffered a lot and did a lot of damage to the skin and their lives by waiting it out with doctors that have no idea what it’s like to live with such skin. They have scarring and even psychological trauma from feeling ashamed. They did all the crap of oral and topical antiboiotics and all the stupid ointments and all the other things doctors give you before you have to beg and cry for accutane.

    symptoms therefore can, but don’t have to return. everyone is different. but one thing for sure, there’s nothing that works better – at least for me and those I know. good luck.

    • Laura says:

      Hey Mandy,
      When you first started accutane, did you notice that your pustues/papules got a little worse before they got better?
      Thanks
      Laura:)

  31. Ivan says:

    Helene,

    It is my understanding that low-dose Accutane (40mg per week) is a maintenance treatment and coping strategy, not a cure. As such it works very well in my case but I have the papulo-pustular variety of Rosacea – the treatment may not work for other varieties. Furthermore, the treatment can cause serious birth defects if taken while pregnant so females hoping to bear children must take this into account.

    Ivan

  32. helene says:

    Thank you Ivan and Mandy for the response.
    Just began trial of low dose accutane yesterday. ( 10mg/day). I noticed several hours after taking the first dose that my face flushed considerably more than usual, and there was pretty immediate exacerbation of swelling/bumps. This obviously has made me nervous, and unsure as to whether to continue. Does anyone have experience with initial worsening of symptoms when first taking, before it improves.
    Thanks so much
    helene

  33. Bjask says:

    Hi Helene,

    I remember I flushed a bit and felt some burning after my first pills. If you stay on low doses and feel your way forward, I think this should not be a big problem or cause any harm.

    Regards
    Bjask

  34. sam says:

    My rosacea first flared nearly 12months ago after a “beauty treatment” and it has been a long a upsetting path ever since. My main symptoms are bumps that come and go literally overnight (sometime even within hours) but most debilitating is the burning I feel which kicks in like clockwork around 9.30am till around 4pm. Then if I am really lucky like tonight it cooled down for a few hours and has just started to burn again. If I hold my hand just above the surface it’s like a heater! I have been on doxy, minocycline, rosex gel etc with no effect. Had 4 sessions of IPL and am now on week 6 of topical isotretinoin (roaccutane). My derm had no issue after everything we tried in giving me a script for oral roaccutane. I filled the script but have had the box sitting in my cabinet for 1 month now as I feel quite scared to take them. I read all the good reports on here and then you get the odd one that’s not good and it scares me. My capsules are 5mg only to take once a day. It was a new low dose which my pharmacist had to get direct from the company as they cant order them the usual way. I feel like if I could stop the burning I would put up with redness and bumps just to not “feel” my face for most of my waking hours. Can roaccutane help with the burning?

  35. Ivan says:

    Sam,

    With the papulo-pustular variety of rosacea that I have, the burning sensation goes away with treatment (40mg per week in a single weekly dose). Certain foods trigger a burning sensation, however, as does alcohol and excessive sunlight. Individuals respond differently to different foods. In my case, foods in the Brassica family such as broccoli, brussels sprouts, cabbage, etc. provoke a very strong burning sensation with accompanying redness that looks like a bad sunburn. I remember seeing a list of foods to avoid at the National Institutes of Health website years ago but I can’t find it now. Such foods were high on the list of foods to avoid so I removed them from my diet and experienced immediate improvement. This was long before I discovered low-dose Accutane. Coffee promotes redness in some individuals but it doesn’t do so for me. Since your condition doesn’t seem to be of the papulo-pustular variety it is hard to say if the dosage you are considering will work as it did for me but I don’t see any harm in trying.

    Ivan

  36. sam says:

    Thanks for the information Ivan, I decided to push ahead last week and am at day 8 of taking roaccutane. Amazingly 3 days in the incredible burning I get everyday did not seem as bad and the last few days have been great. It has been a blessing not to feel my face on fire for the best part of the the day. Even the redness seemed to have less of that sunburn appearnce and took on a more slighlty flushed look (without makeup) and you wouldnt even know with makeup on. Little disappointed today as one of my cheeks has a bright red patch and a few blotches came up but I still have not had the burning feeling. I will try not to be despondent about that given that it’s only been a week. But a week without burning is certainly a blessing. No side effects yet, guessing due to the dosage size so hoping to see more improvement over the coming weeks.

    Kind regards
    Sam

  37. Bjask says:

    I have a question for Mandy or others who have been on accutane long term. I have taken around 4000mg over a 2 year period. With some breaks now and then. Lately I felt a mild pain in my spine or tale bone, after sitting long. It goes away when I walk, and it is not always there. Did any of you experience something similiar? Is there anything to do to make it go away? I should maybe consider a longer break from accutane than just a month or two.

    Regards
    Bjask

  38. Ivan says:

    Bjask,

    I have experienced no such pain myself. The symptoms you describe seem unlikely to be related to Accutane. I would look elsewhere for the cause and continue with low-dose Accutane if it has helped with your Rosacea so far.

    Ivan

  39. aleks says:

    Bjask,

    I was on low dose – or not so low (20mg/day) for a whole year. That was my second time – the first time I took it for acne vulgaris. I did develop back pain and serious gastro problems that I’m almost certain – cannot prove, of course – are related to the isotretinoin. The back pain is similar to what you describe – gets bad when you’re inactive (resting) and goes away when you move. Almost 4 years after I stopped the treatment, I still feel the side effects. After living with a good skin for some time, my rosacea is back and bad as ever. Antibiotics do not seem to work at the moment as they did. Maybe I should have stayed on a maintenance dose forever. Believe it or not, I’m contemplating going back on the drug. Despite of all the health problems – don’t even get me started on my stomach problems – and huge medical bills in the last years that I relate to roaccutane. On one hand, it is this toxic and highly dangerous drug that can potentially ruin your health (I was a healthy 28 year old when I started taking it), but can do miracles for your physical appearance. On the other, it is a life filled with shame, missed opportunities and suicidal thoughts. I’m thinking of choosing the first, albeit with a very heavy heart and tears in my eyes.

  40. Amanda says:

    Sam- I was wondering how you are doing on the Accutane. I am considering it myself and am as concerned as you were about the side effects. I have exhausted all other paths of treatment including lasers. My skin looks like a weathered cowboy’s or something especially when the sun hits it. The pores are huge and my face is constantly red and puffy. My sister was on Accutane in college for acne and it changed her life. Her skin is gorgeous now with virtually no visible pores and absolutely no redness and she is now 35. Thanks for any feedback you can provide.

    **Also Mandy: You mentioned you had nose bleeds with your rosacea. I also get nose bleeds and didn’t know if it was related to the rosacea. Did the Accutane help this as well for you? Does rosacea cause pores to appear much larger because mine are ridiculous. I have basically stopped socializing and hate seeing myself in the mirror.

    Thanks to you both (and Ivan) for sharing your experiences.

    Warm regards,
    Amanda

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