Accutane Long Term Side Effects (Page 82)

I have a son that took accutane 60 mg a day for six months in a row three years ago. Now after many trips to doctors over strange medical problems, it seems accuatne is the culprit medication that has caused servere joint and muscle pain, severe dry lips, redness in face, eye infections of own immune system attacking itself, systems of osteoarthritis in both shoulders, both wrist and right hand, blood in stool, possible hair loss, abnormal liver function test results in AST and ALT. My son went from being a high school football and track athlete while taking this medication three years ago to someone that is in constant pain just washing a car. After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne. All one has to do is look online what vitamin A overdose does to someone and then you have the results of what this medication has done to my son. This drug needs to be taken off them market ASAP and the drug companies that make it need to compensate all teenagers that they have possible ruined their future. Shame on them! What is going on here?

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Hello Dr. Steve,

I took Accutane for less than a month in July-August 2013. I was 21 when I took it.
I am originally from China and am studying in UK now so it's quite difficult for me to find my old medical record. I will try and report back if I find anything. I don't think it was a high dose as I am a very small person (5''2', 45KG). I had only a few spots to start with but my stupid derm gave me Accutane.

Now a year later, my hair is still thinning it is very very depressing. I have been on Rogaine for almost 3 months now with no results apart from going through 10 weeks of dread shed. i will continue to use it for another 3 months.

Hair loss is my only side effect from this drug. I have visited one private derm in UK and he thinks I have telogen effluvium.

So one year off Accutane, lost 50% of my hair. I don't lose a lot daily (<100) and I do have lots of regrowth. However my scalp starts to show and sides are very very thin.

Please tell me what to do Dr.

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We really don't have a good treatment for hair loss yet. Just Rogaine. Sorry. Telogen Effluvium is a name for a type of hair loss that occurs several months after some event like taking a drug a severe mental and physical stress. The hair loss runs it's course and corrects itself a few months after that.

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There was no internet for those of us who took it in the 1980's!!!!!!

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New study about isotretinoin and IBD:

"Our study did not show an increased risk of IBD with prior isotretinoin use. If anything, the risk seemed to be decreased."

archderm.jamanetwork.com/article.aspx?articleID=1902293

It's interesting how this drug can be so contradictory...

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Thank you Dr. Steve.

I'm in my 12th week of Rogaine. I am still shedding pre-Rogaine amount. I do see regrowth and lots of new vellus hair but I shed more than regrow hair in the last 3 months. How long should I be on Rogaine to see maximum results? I am using the 5% foam, a capful, once a day.

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Dr Steve you freely admit that accutane does cause severe long term sides in some people who take it,how do we get other derms and the rest of medical community to recognise this aswell?? Roche can't get away with ruining so many lives over mild and moderate acne. They can't give people back there health or loved ones that have committed suicide but we should get recognition and compensation for what accutane has done to our bodies. I barely get through work each day I'm so stiff and sore all over, my joints are continually degrading. I'm not the only one. I think it's pretty obvious you derms will never lose access to this drug so how about helping the ones who have been severely injured by it. Through my research it appears that most derms are using lower doses now trying to minimise long term side effects while still not publicly admitting that higher doses cause severe long term side effects .When will the lies and cover ups stop. When will the people hurt by this drug be vindicated and stop having to troll the net for answers on what accutane has done to them??

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Freely admit is going a bit too far. I'm open to the possibility, which is why I am on this site. Certainly the possible mechanism exists as retinoid receptors are everywhere.

Drugs do have long term side effects. Ibuprofen routinely causes ulcers and kidney failure, birth control pills can cause life threatening blood clots, bactrim (sulfer antiobiotic) very rarely causes stephen johnson syndrome, basically all your skin blisters off and you may die. We know this but frequency matters (not if you are the one who gets the side effect of course) and of course weighing the risks and benefits etc. It is not a black and white issue, it is a very grey issue.

I am interested, Seeking Recognition, give me a number if 1 in x hundred or thousands or tens of thousands of people who get side effects like you did, should accutane be withdrawn from the market. Factoring in of course that it is the only drug that can effectively treat severe acne and a few other diseases. I'm interested in where you draw the line given your experience.

Thanks

Dr. Steve

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Adverse reactions to drugs are hugely unreported so using woefully inaccurate statistics to demonstrate the safety of a drug is a deceptive and dangerous tactic best left to the drug companies who invented it. I have never said accutane should be banned, I believe it has a place in treating very severe acne which is causing immense emotional distress/suicidal ideation. I draw the line at giving a chemo drug to children with mild/moderate acne who are so young there not even physiologically capable of making decisions that will effect the rest of there lives. I feel too many doctors are failing to make a real risk vs reward assement when prescribing accutane, here you have a drug that can destroy lives over a mostly adolescent and almost certainly a temporary ailment such as acne. I live in chronic pain and discomfort everyday because of relatively mild case of acne that I would have undoubtedly outgrown already. We can't save everyone from long term accutane sides but more can be done to minimise them by reserving accutane for the ones who really need it.

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Dr. Steve, do you have any recommendation to all patients who suffer joint pain caused by isotretinoine? I have visited various rheumatologists and they couldn't find anything. The last one thinks that I am suffering spondyloarthritis. I have been taking methotrexate for months but it is not helping me and I am getting worse every day. If you were one of us, what would you do? Who or what could help us?
Thank you.

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the "biologics" like Enbrel and Humaria have better side effect profile than methotrexate and are usually more effective but super expensive. That's all the advice I have.
Good luck

Dr. Steve

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Excellent answer, more drugs to treat the side effects of another drug. The allopathic healthcare system in a nutshell

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Oh boy; saying "allopathic medicine" carries such a negative connotation.
It makes a person sound like one of "those guys".

On the other hand, I have to agree. Humira has been linked with a greatly increased risk of lymphoma. A dose of cancer for your chemo side effects.

Dr. Steve sounds more interested in finding a new way to market Accutane as "safer at low doses" than trying to help anyone whose life has already been ruined by it.

It's lose-lose with Accutane side effects.

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I'm not an expert (I say this all the time when I have not done all the research for myself like I have with accutane) on "biologics". The data I have seen does show a slight increased risk of lymphoma but people with psoriasis have a slight increased risk of lymphoma anyway. So we don't prescribe them if there is a family history of lymphoma or just monitor closely.
There was a biologic 8 years ago called Raptiva which was pulled off the market a few years after it was introduced for some kind of rare brain cancer. FDA doing it's job. Enbrel has been on the market the longest. So anyone thinking of taking these higher order medications should not trust non expert opinion when we have facts. Do the research yourself. We are in the information age, go to pubmed..... unless you don't believe what "they" say in which case seek alternative medicine which I actually use but generally has a low success rate for serious problems. I like Bills use of the word "market". I'ts odd as I don't work for any drug company.

This is my last post for a while. I feel I've worn out my welcome, If most of you regular posters want an echo chamber you can have it for a while.

But just remember, everyone is entitled to their opinion but there is only one set of facts.

Dr. Steve

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Actually doc I'd had enough of you the moment you referred to all accutane victims as an accectaple statistic. We are real people not just numbers on a page. I'll be so sad to see you go. Bye

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Sorry Dr. Steve, I should have specified "point of service" marketing for your particular situation since you will be billing incoming patients for prescribing Accutane and for the follow-up visits.
Too bad Roche isn't still running their "Accutane incentive program for physicians," which I was informed of by a physician whose son was severely impacted by taking Accutane. Perhaps the other manufacturers have their own payola plans.

As we discussed previously, there are several sets of conflicting facts regarding Accutane available via pubmed.

You also have some nerve if by alternative medicine, you mean "non evidence-based medicine," and yet you are charging patients a fee for non evidence-based treatments. Hope this is not the case.

We're simply collateral damage talking amongst ourselves from your perspective.
Loud, but too small in number to warrant attention.
But how would you feel if this happened to one of your own children?

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Thanks for answering Dr. Steve. I am very sorry that you are leaving this page forever. Please understand we are suffering a lot and it's not easy to receive unhopeful answers from doctors.

In my previous post I was not asking for advise about spondyloarthritis medicine. As I said, I am quite sure that I am not affected by this disease. My only problem is an joint degeneration caused by isotretinoine, and this spondyloarthritis medicine is wasting my time, money and health. I am consuming it because I don't have any other solution at this moment, but after some months taking it my health has gotten even worse.

I was asking for advise about how to proceed from now on as rheumatologists don't know how to help us. We don't want to wait for death at bed while suffering pain. We would like to fight against it but we don't know how to do it. Who or what could help us? It looks like we are thousands of affected patients and we all want to get our life back. We even could all together hire a doctor or study to look for any solution. The problem is that we haven't found nobody who could help us and we don't know where to ask for help.

It's that simple. What would you in our situation? How would you help your son if he is suffering the same degeneration?

Thank you.

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Xavier,
Spot on with your last post ! We are just looking for someone with knowledge whether it be from the medical field that got us to this point or alterative medicine that may be helpful in the future. Very well stated.

Scott

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I took Accutane in the 1980's, I immediately have severe joint pain, dry mouth, dry eyes. It was so painful to walk, today I've been treated with severe fibermyalgia, osteoarthritis in all my joints, dry eye disease, severe dry mouth. Bowel problems. One doctor says I'm drying up from within. Painful to sit, walk, just surviving each day to make it to the next day. I'm sure that my degenerative health issues are still from the results of taken Accutane for four those many years ago. I have had two knee replacements, neck fusions and low back fusion. Don't take Accutane

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"Drying up from within", is what has happened to my bladder since taking Accutane.

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