Accutane Long Term Side Effects (Page 16)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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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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Excellent answer, more drugs to treat the side effects of another drug. The allopathic healthcare system in a nutshell

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

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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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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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Hi, I can't see your e-mail because of privacy restrictions.

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I just read the comments for the first time. I have been haveing many of the same problems and was on actane.

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Hi Dr Steve,
I was on a low-average dose of isotretinoin (Claravis, if I remember the 'brand' correctly) for approximately 6-7 months. I had excellent results and had minimal to no side effects/adverse events, and the same continues almost 4 years later. I'm curious to know if you or others have heard of any long-term post-isotretinoin studies/trials monitoring pregnancies and/or births. I took the drug when I was around 22 years old. I am now 27, married, and interested in starting a family within the next couple of years. I'm a little nervous for the possibility of any issues that could come from having taken the drug, but I know the medical field suggests there are no risks post-drug. Thanks!

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hi xavier,

my email is {edited for privacy}

I been doing abit of research lately, and my symptoms are similar to IBD Crohn's disease > blood in stool, ticked > bloating, ticked > joint pain, definite ticked!

I am going to see a GI and Rheu to see if this is the case.

BTW I weight 76 kg.

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I have lower but similar side effects. What is your e-mail address?

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Hi guys, I would like to share my story and experience with accutane. Unfortunately I believe I am another patient who suffers from suspected long term side effects from taking roaccutane

doses-
Round 1 - 40mg for 7 months ( 2011)
Round 2 - 40 mg for 10 months (2012)
Round 3 - 20mg 2 month (2013)

Side effects suffered during treatments were the usual side effects such as dry lips, headaches, joint pain which went away.

Round 2, more severe side effects such as minor hair loss, nausea, had strange itchy hives which went away and finally intestinal issues (IBS or IBD) . The stomach issue was the final straw and I decided to stop taking the drug . My family had history of stomach issues and I thought it must be that.

Round 3 (December 2013) I was desperate to treat my oily skin and I read on a website about people successfully treating their oily skin with ultra low dose of accutane. I have 1 box left and thought what else could go wrong with me.

After two months, 1 month of 20mg and tapering down to 5mg per week. I started to develop some strange muscle aches and bone creaking around my body. I was getting concerns that these symptoms could be related to the accutane. So in mid February I decide to stop.

3 weeks later a sharp pain started in my left foot (it hurt but it did not swell up). Saw the doctor and foot specialist and no one could say what it was. It was aching pain my left ankle joints or ligament, sometime the pain run up my achillese. I thought it was sporting injuries that fair up again.

Long story short, fast forward 6 months and the pain is still there and now I can feel the aches spreading all around my body :( . My back, my knees, my fingers. All my joints now creaks and its hurts to stand and walk.

I cant sleep now cause my back hurt so much and I feel like its getting worst.

If anyone you guys, share similar experience, I would like to chat via email, you can catch me on {edited for privacy}

I would to get what ever I have diagnosed and get proper treatments!

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Dr Steve,

as a patient who suffers long term side effects from isotretinoine, I will answer your questions in order to help other patients:

1. WHAT DOSE DID YOU TAKE AND HOW LONG

I took 20mg during 1 year. At that time my weight was around 63kg.

2. WHAT SYMPOTMS DID YOU EXPERIENCE, HOW EARLY DID THESE SYMPTOMS START AND HOW SEVERE WERE THEY?

During the treatment I had pain in my Aquiles and dry lips. Since I stopped taking the drug, the Aquiles pain has increased and I have several joint pain in othe parts of my body: lumbars, hands, elbow and knees. My Reumathologist thinks that I am suffering a kind of spondyloarthritis but all diagnostics give a negative result. I can't do any kind of exercise and my life is getting worse every day. I don't think that next year I will be able to keep any job.

Thanks for listening us.
Xavier.

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Seeking recognition. Something very interesting about accutane is that .1 mg/kg (yes .1)clears acne as well as 1mg/kg but..... you only get long term remission about 30 percent of the time on .1mg/kg(yes that's 5-10 mg daily depending on body weight.) Now the difference in side effects from .5gm/kg and 1mg/kg is quite large as the side effects are dose dependent. Most people on 1mg/kg are dried out and miserable with a higher amount of "constitutional side effects" (fatigue, joint aches etc). with .5mg/kg people with long term remissions are about 70%. With 1mg/kg, twice as much with twice the side effects, the long term remission rate is just marginally better at 80%.

This is all not common knowledge. You have to dig into the studies to know this or talk to alot of people.

I interviewed a person known "the godfather of acne treatment" he is 75 now and was very involved with accutane trials and guidelines as well as everything else acne, he is dozens of studies. He feels that we are way too concerned about getting the highest remission rates possible and should use lower doses. I agree. Much higher side effects short term and surely higher chances of long term side effects for only a marginal improvement in remission just isn't worth it.

Thanks

Dr. Steve

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