Anyone here have experience with severe acne and Accutane?

[ChoralScholar]

The Adderall thread got me thinking about my experience with Accutane.

I had a very rare condition known as acne conglobata (Google it if you want to understand it better) It was super-severe in my case. It was a real morale booster to look up cystic acne in medical books only to find the pictures were nowhere near as bad as my condition. NO drug would even touch it.

At the time (1990) there was an experimental drug known as Accutane (generically isotretinoin) - I went on it, and it cleared up my condition for several years. When I was 22, I had a small relapse, and have been experiencing the conglobata symptoms in a few isolated areas for about 5 years.

Now that I have health insurance again, I am considering another run of Accutane.

However there is some press about Accutane and its psychological side-effects (i.e. class action lawsuit by parents of children who committed suicide while on Accutane)

Anyone been on it? Anyone relapsed and gone back on it? Just looking for some thoughts from some of you guys.

ON EDIT: for clarity

[Must_B_Free]

1. DId that kid in FL

who flew a plane in to a building take this drug?

[ChoralScholar]

2. I dunno. Could be.

[Syrinx]

3. don't do it!!!

It will fuck your heart, liver, lungs, about everything you've got. I think there's a class-action lawsuit going on over it. It's proven harmful, and yet it's still being legally sold.

DON'T DO IT!!!

[neebob]

4. Accutane was experimental in 1990?

I had a girlfriend with terrible acne who took it in 1982. It totally cleared her up - really fast - and she never had any problems. But she was 23, not a teenager.

[ChoralScholar]

6. wow.. they told me it had just come out and was still experimental

Oh well, doctors were still very hesitant to use it, at any rate, and apparently for good reason.

[neebob]

7. I'm sure it was Accutane

and it could have been 1983, but I'm thinking '82. It was amazing how quickly her face cleared up, and it was bad. It made her skin dry, as I recall, or maybe I read that somewhere. I also read that it's very harsh. I'd think twice if it's associated with organ damage, even if you took it before.

[NJCher]

5. used to work with that drug

When I worked for Roche Pharmaceuticals, its manufacturer.

It really is an amazing drug but I do recall we kept having those tragic suicides. It really rocked the company when this would happen. To Roche's credit, I think they were sincere about seeing if there was a link and they were also very good about the communication aspect. They put everything they knew on the product information sheet. They also had a program where they worked with doctors to communicate with the patient about the drug.

If you take it, I sure would be careful to read everything associated with it. Also do a literature search.


Cher

[Piltdown13]

8. I haven't been on it myself...but...

my boyfriend did two full courses of Accutane several years back. It got rid of the back acne...well, basically all acne was gone except for on his face.

Unfortunately, he's one of that tiny percentage of people who isn't just about cured after two courses. For the past few years he's been taking what I would call a "maintenance" dose of Accutane -- I guess about 20-40 mg once a week. This is not accepted medical practice yet, but he's been able to find doctors willing to let him do it. Which is a good thing -- just recently he ran out, and decided to try going off it again. Let's just say that was not an appealing option for him after a couple of weeks -- he gets the acne that looks almost like open sores, and on his scalp too. (FWIW, the reasons he hasn't tried another full course of the stuff are that 1. he can't afford another full course and 2. even if he could, the doctors aren't certain that it would end the problem, which makes him hesitant because of 3. the side effects.)

He's never had the really severe psychological side effects as far as I know, but it tends to dry out his joints somewhat as well (not sure exactly what is happening there, but his fingers and knees, etc., pop a lot more when he's taking Accutane), as does his nose. Now, when he was on the full course (which would now be 120mg per day), the joint cracking was much worse, and his nose was so dry he would get spontaneous nosebleeds. Probably the effect of greatest interest for you was that he apparently felt "off" mentally while taking the Accutane. He did those courses about a year apart, and he told me that his grades (grad school, FWIW) went down by about a letter grade each time, and when he reviewed papers written those semesters, he was amazed at the connections he'd missed, points he'd failed to make. It sounded to me like a kind of low-grade brain fog, along with fatigue/lethargy.

Hope this helps!

(Edited to add info)

[ChoralScholar]

9. Hearing these things and doing a little research

I wonder what medical conditions I now have that can be attributed to my long course of accutane.

[Piltdown13]

11. Although it's just anecdotal...

I should add that when he's been totally off the Accutane, the side effects stop completely, and AFAIK he hasn't had any long-term medical issues that came up after taking Accutane. Not to say that some people wouldn't be more severely affected, but that's been his experience. Just wanted to get the complete anecdote up for you!

On edit -- I am not trying to minimize the deleterious effects that some users have experienced after taking Accutane. I'm not familiar with your particular form of acne, but it sounds like you might want to exhaust all your other options before giving Accutane another try. Many more alternatives exist than was the case even a few years ago.

Of course, you may find that the risk is worth it. I know that has been the case for my boyfriend. He doesn't enjoy the stuff, but he's just miserable when his skin is producing those vast quantities of oil (several of our pillowcases have been ruined) and he's getting the giant, painful blemishes.

[ChoralScholar]

15. My main problem is extreme fatigue and sleepiness

no matter how much rest I get, I am drop-dead tired after a day of teaching, and need to nap for an hour or two before I'm even ready to face dinner.

I never had any mental problems such as are associated with the drug.

[Piltdown13]

16. In that case...

I'd suggest that you might have difficulty with adding Accutane to the mix, at least as a full-strength course. If it didn't affect you at all the first time, it might not be as much of a worry, but then again, you're in a different life situation now than the first time. Maybe a lower dose would help...I know that my boyfriend doesn't have any of the brain fog or fatigue on his "maintenance" dose.

[Syrinx]

10. if you didn't hear me the first time...

The side effects caused by this drug can be horrific. Accutane gained notoriety in the mid to late eighties for the severe birth defects caused by the drug. In addition to birth defects, the drug is associated with causing severe psychiatric side effects as well as many systemic side effects including inflammatory bowel disease, and damage to the liver, kidneys, central nervous system, pancreas, gastrointestinal tract, cardiovascular system, musculosketal system, and the auto-immune system of the human body. Many side effects are permanent, severe and devastating to an individual. The fact that so many people are experiencing adverse effects from this drug is not surprising.

http://www.bigclassaction.com/class_action/accutane.html

[TheMightyFavog]

13. Yeah

Congressman Bart Stupak's (D-MI) son was n Accutane. the ensuing depression drove him to suicide.

[RodneyCK2]

17. Thanks for the report. Scared me to death...

but then again, I do not trust very many drugs these days, especially in a day and age where pharmaceutical drug companies have taken it upon themselves to advertise/market their goods, much like a drug dealer.

Sure they spend half of the add explaining the side-effects, but who can say what the long-term effects might be and what they are not telling us.

[RodneyCK2]

12. Wow, I am amazed I found this thread and here of all places.

I was put on accutane in 1983/84 after trying everything in the book to clear up my severe case of acne. There is nothing like a bad case of acne to cripple a high school students' social life.

The upside to the story, despite being told it was an experimental drug and it had a few side effects associated with it (none of which occurred in my case), it was the only thing to cure my acne. Luckily, I was left with little to no scars, maybe a few on my upper back, but nothing noticeable.

Now, I am 38 years old and about a year ago, I started to get what appears to be an outbreak of "whiteheads", not really pimples. The strange thing is that they will not disappear despite all my efforts with over the counter drugs. I am now trying some retinol-a which is the only thing that has helped some, but I am far from cured. My question is why now? Why won't they disappear like normal acne that runs it course? I will give the retinol-a a few more weeks, but I am afraid it will be back to the doctor.

Now, with this post, I am thinking that maybe it has something to do with taking the drug accutane, or not? I am at a loss.

[Piltdown13]

18. Maybe there's a different mechanism for your problem

and thus, a different course? I've had something that sounds similar to what you describe...well, ever since puberty, really. Little bumps that are similar to whiteheads, but are in fact not really whiteheads. I can't remember what my dermatologist told me they were, but they're on the backs of my upper arms and there are patches on my cheeks. Little bumps that can be anywhere from near-white to flesh-colored to red (though that's probably because my skin tone is pretty rosy). The dermatologist put me on Retin-A for quite awhile, but it never completely got rid of the problem, then on something called Tazorac...again, didn't completely eradicate it (although I perhaps should have given it more time to work; unfortunately, I got tired of my face being dry to the point of peeling despite using loads of moisturizer). I'm actually starting to see some results using St. Ives Apricot Scrub; I've been trying to use it twice a day for a couple of weeks now, and I'm optimistic that I'll see continued improvement if I can manage to adhere to that schedule more faithfully.

I wouldn't think that your condition has anything to do with Accutane, especially after all this time, but if there's anything I've learned about these powerful, side-effect-laden drugs, it's to never say never!

[RodneyCK2]

19. Thanks and although I feel for "our" dilemma, I am glad...

not to be the only one suffering from them. Yes, they are not really whiteheads, although the look like them. I will try the St. Ives Apricot Scrub as you suggested. I will rub an elephant's butt at this point if it would help.

If you remember the clinical name for this condition, please post as it may help others in the same situation.

Again, thanks.

[Piltdown13]

20. You're welcome!

Still can't remember the name, but I do recall the dermatologist telling me that it had something to do with pores getting clogged with dead skin cells, which I suppose is why the scrub works -- exfoliation is just what's needed. And, better yet, the stuff is still pretty cheap!

Edit -- I just Googled around a bit, and the only thing I could find was called "keratosis pilaris." It sounds vaguely familiar, though it's supposed to be genetic and appear in adolescence or before, so not sure if it's what you've got (though it can come and go, so maybe you had it before and it was just obscured by the acne, cured by the acne treatment, and is now back). The good news is, it's pretty harmless, though it can go away and come back repeatedly. One thing that was frequently mentioned in terms of treatment was Lac-hydrin (which, now that I think of it, I was on for awhile, and it did work), available in both prescription and OTC strengths. So there's another possible, ir expensive, option, if the apricot scrub doesn't work. :-)

[RodneyCK2]

22. Again, I can't thank you enough.

I to did a search on the internet for answers, WebMD.com, etc and finally came across "keratosis pilaris" as a diagnosis. It sounds very familiar and oddly enough, the last visit home I saw my brother (had not seen him in awhile) and he noticed the bumps. He pointed to his face and said, “I am starting to get the same thing” (he only had two) and he can not get rid of them. So, perhaps it is a genetic thing.

I will look into this more closely and use your suggestions. You may have just saved me hundreds of dollars, something I don't have at the moment, and I can't thank you enough.

[Piltdown13]

24. Glad I could help!

It can take a couple weeks to start seeing results with the apricot scrub, so don't give up too soon! I've also noticed that it's helping with the bumps on my upper arms, even though I only use it once a day there.

[dwckabal]

14. They make topical accutane as well...

maybe you can give that a try instead of the oral version.

[girl gone mad]

21. I was on Accutane years ago.

I had some back pain while on it, and night vision disturbances, but no permanent damage. Most models and young actors that I know take or have taken Accutane.

Permanent liver damage is easily avoided by getting the required monthly blood test to monitor triglyceride levels.

Accutane is synthesized Vitamin A. It's a miracle drug for people who have disfiguring acne, though it does have a strong side effect profile. Pregnant women must avoid it completely because it causes devastating birth defects.

Accutane has some long-term health benefits that the drug company doesn't promote. You should discuss treatment with your doctor. The drug has been prescribed since the early 80s, and Vitamin A has been around much longer, so doctors have a good idea of the risks and benefits.

[AlFrankenFan]

23. It worked, then I stopped taking it, then when we got our dog...

It came back, so I'm using it again and it's working well. Just can't let my dog lick my face.

[Tom_Foolery]

25. I used Accutane in early 1984...

I didn't have problems with it. I had the monthly blood tests. The only strange thing that happened to me was a few years after using it, I was working in a bakery. It was summer, and my boss had bought a huge supply of powdered lemonade. He told us to help ourselves, amd drink it while we worked because it gets pretty hot in a bakery. Well, my face began to break out again. I was 28 years old by this time. I realized that my face started breaking out about the same time we started drinking the lemonade. I took a look at the ingredients and found that the lemonade had a high level of vitamin A. I quit drinking it, and my face cleared up. Now whenever my face breaks out, I check the ingredients of any new food that I've eaten for vitamin A. I guess Accutane made me sensitive to vitamin A, but it cleared my face up very quickly.

[ChoralScholar]

26. Vitamin A, huh?

I'll have to check on that... maybe if I can avoid the stuff, some of my current acne will go away.