Accutane Long Term Side Effects (Page 86) (Top voted first)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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?

REPLY

REPORT

Ruby,

You really just need to go to a different dermatologist. Someone who listens to you, answers you questions and explains treatment options. It is sometimes hard for patients to be assertive with doctors because they are the doctor and they know what is best for you but as you have seen, some are just insensitive people trying to get through their workday as fast as possible. Find someone else, come in with a list of questions, if the doctors answers them all and is patient and caring then you have found a good one. Sorry there is not much I can do just looking at a picture. Good luck

REPLY

Was this helpful? 0

Dr Steve,
To answer some of your questions....My son took 60 mg of of Amnesteem ( 20mg morning/40 mg evening ) for 6 months when is was 14-25 years old. His story is the first listed in this post of his side effects. During the last month of his treatment he was rushed to ER during High School Track Event due to turming pale and feeling like he was going to pass out. ER diagnostics reveal nothing but blood in his stool. Drug Manufacturer was contacted by his Dermatologist and responded with letter admitting Amnesteem had completely dried his colon out. His is now 23 year old with arthritic changes in both wrist, both shoulders and right hand. He had Compartment Syndrome surgery on his right leg 4 years ago. Doctors have absolutely no clue why he developed it. His pain level everyday is always from a 1-5 on a scale of ten everyday. He is very limited with his physical ability since taken Amnesteem. Although colonoscopy was negative 4 years ago, he has many signs of IBS. Unfortunately he was recently hit head on in a car accident with both knee's injured. Previous "side effects" from Amnesteem will haunt his daily health for the rest of his life. Look in this post for anything wrote by Scott and you will find more detail. It is nice to finally see a Doctor on this post. Hopefully you will be able to give good insight on the possible side effects of these drugs.
Scott

REPLY

Was this helpful? 0

Dr. Steve,

In regards to your query, I was on Accutane at 19, roughly 180lbs 30mg for a month then 60mg for four. My dermatologist stopped treatment claiming success. I was side effect free with the exception of dry skin / hair / lips which all went back to normal about a month after treatment.

I received a second round several years later. Still roughly 180lbs 40mg for a month, 80mg for two months and 100mg for three months. During this time I developed the usual side effects as well as migraines, hip pain and blepheritis which persist to this day. I had no history of any of the three until my second course.

I believe the difference lies in the pill itself and the inactive ingredients as well as the dosing. The first, I took Accutane and the generic Sortret. My second course was generic Claravis and an enormous purple pill whose shelf name I can't recall.

REPLY

Was this helpful? 0

Dr. Steve 185 lbs. 80 MG a day ( 20 MG morning/4G at night). 6 months total. Side effects listed in last post.

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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!

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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...

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

My discs too. Hang in there brother.

REPLY

Was this helpful? 0

Xavier my friend, I am from Brazil and I got the same problem as you, I developed a series of joint problems after using accutane for six months in 2005, the doctor prescribed me high doses, 2 months 40 mg, 60 mg 2 months and 2 months 80 mg. Developed soon after osteoarthritis in both shoulders, synovitis in both elbows and both wrists. The Accutante destroyed my life, I can not practice more bodybuilding, I have pain every day, had to go through six surgeries, shoulders, elbows and hands. Accutane has to be ou of market or the use restrict to very bad acne cases with extreme low doses. No rheumatologist can discover what I have, some say it's spondyloarthritis. What I have is post accutane syndrome, I do not know how to solve, the only way is to avoid activities that cause pain, take painkillers. I've thought up in the use of HGH, as it strengthens the joints. I wonder if anyone has tried this protocol, against the use of HGH side effects accutante.

REPLY

Was this helpful? 1

I had Harvoni treatment last spring. I am not the same. My nervous system is a wreck. My anxiety problems have increased...

263 REPLIES

What are the long term effects of the brain and mood changes in people taking 30mg of oxycodone for years? Do they act w...

6 REPLIES

My wife has been using Nexito Plus for the past 4 years. She is doing good, but she feels sleepy in the morning time and...

3 REPLIES

my boyfriends complaining after taking large dosages prescribed by doctors for sleep that he feels loss of sight, blurre...

3 REPLIES

My doctor just prescribed me Tramadol for a chronic back pain issue. If I take this med every night, will there be any l...

2 REPLIES

I have been taking clopidogrel 75mg + atorvastatin 10mg + metoprolol 10mg + telmisartan 40mg for the past 3 years since ...

1 REPLY

I am 41 yrs male.For the past one month occasionally one or two of my fingers move sideways without my control and then ...

1 REPLY

My father has been prescribed ecosprin 75 along with Dytor plus 10mg, prolomat XL and cardace 2.5 by a cardiologist. He ...

1 REPLY

I was just prescribed this medication by my doctor, because of irregular periods. For the past 2 years I have had my per...

1 REPLY

Folks, like everyone else who has started MULTAQ, I am having second thoughts about it's effectiveness. When I first...

1 REPLY