Accutane Long Term Side Effects (Page 85) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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?

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REPORT

I had roaccutane around 25 years ago. I had a one month course, it completely cleared my acne and it hasn't come back since. I've had no side effects whatsoever, I didn't even suffer from dry skin or lips.

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I posted on this forum two years ago when I was 18. I took accutane when I was 15 and today I see a psychologist who I had explained my story to. It is clear that accutane has had a permanent effect on me psychologically due to the fact that I look exactly like I did five years ago. I am the exact height and weight as I was five years ago, this might sound like a silly plea, but the truth is that not growing at all in high school and college is devastating for a guy, especially when your short and skinny to begin with. I was a top level athlete in soccer, which I have given up, in fact my head, hands, genitals, and bones in general are still the size of a young growing teenager.
How can I ever look at life the same knowing I wouldn't even look the same have I not taken the drug, I am looked upon by strangers as a young high schooler and my confidence has never been so low in my life. My acne was never horrible, I was still doing well with girls, but now that I look like a young kid my ability to attract women has been lost. I was always good looking and I was maturing steadily, but now I come off as a that tiny kid who never changed. On top of all this my voice still sounds like a fourteen year olds, strangers on the phone have even told me I sound young. I hope one day I become successful enough to discover a new and safer drug to provide to children.

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This is me exactly (Accutane, dermatographia, nightly hives for 10 yrs now)! Have you found anything to relieve your symptoms?

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I am a 32 year old female and am currently 5 weeks into my 2nd course of generic accutane (amnesteem) treatment.

I began my first course was when I was 22 and I have not had any lasting or long term side effects after treatment. I did not have any terrible side effects during my treatment but the medication cleared my acne completely until about a year ago.

Now, on my second course I am experiencing joint pain, extreme fatigue and stiffness. Weeks 1-4 started at 40 MG and now weeks 5-8 my dose has increased to 40 + 20mg. These side effects are slightly concerning since many people have reported in the blogs that these side effects did not go away even years after treatment.

I am curious to know if anyone else has experienced joint pain or fatigue while on accutane... more specifically if it went away after treatment or if it continues and for how long.

Any additional info would be very much appreciated.

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Ernest,

Thank you the detailed reply. I'm sorry to hear that you have so many lingering effects from this medicine. That is very worrisome as there are so many others who report the same long term ailments.

I actually did quite a bit of research over the weekend and found an interesting study indicating lower doses may also suppress the sebaceous glands without the serious side effects.

"Leading some researchers to posit that it is not cumulative dose that brings about permanent clearing as much as it is the length of time that the oil glands are suppressed." --Borghi A, et al "Low-cumulative dose isotretinoin treatment in mild-to-moderate acne: Efficacy in achieving stable remission."Journal of the American Academy of Dermatology. 2011;

I think I will bring this up to my dermatologist and see what his experience has been.

I wish you the best as I continue to research this from all angles.

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I have been on the drug Accutane now for 7 months to treat a twenty year breakout of acne. I could not handle the higher dose of 55mg a day so I have stayed on 30 mg a day for a longer period. My side effects so far have been mild,,very tired and nose bleeds now and then and lacking motivation and creativity (which I usually have a lot of)..I did end up with a burst abcyss 4 months ago which led to peritonitis however, the abcyss could have been building up before I started the drug???!!! I am coming towards the end now (3 weeks to go) and my skin is clear and has been for 6 months...I do worry after reading lots of information, about the long term and invisible or internal side effects. I have lost a lot of time off work this year and I has been a struggle however I think back to the days my skin was so sore withacne I couldn't move or face anyone,,so I am glad to be where I am at the moment

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Hi,, there are thousands of people with the same symptoms that you have. I am suffering severe joint pain and still haven't found a solution. Now I am trying glucosamyne but I can't share the results yet. Some people say that helps with joint pain. Good luck y best wishes.

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Indeed.

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The disease of the bladder I have isn't one of the 3 gastrointestinal diseases listed in the class I was aware of in 2009-10. How can we start taking legal action?

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Scott, please stop it before it's too late. This is the best advice you will get.

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Hi Im Vietnamese. I tool this medicine for abt 4 months. Then my lips are so dried andhad problem then I stopped using it. After 1 week, my face is growing more and more small pimples destroying my face. Before taking Isotretionin, my face just grew some pimples near my pms. Now pimples still grow and Im very stressed down.

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Sorry, but you shoudn't give such a bad advice. It is not worth of trying. As some other people have explained, once is enough to destroy your life. I have chronical lower back pain and joint pain and I only took this damned drug once. It was enough to destroy my health, perhaps forever.

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Have her thyroid, b12,sugar, Vit D levels checked!

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Iv'e been taking Accutane/Roaccutane for 6 weeks (after trying everything else the medical profession has thrown at me over the years) and the middle finger on my right hand has swelled to double its normal size. I stopped taking it 3 days ago and its already beginning to become less painful and return to normal size, my lips are getting less dry, skin less red and muscles less sore (plus unfortunately first spots I've had in the 6 weeks, I can't deny it's not good sorting that). I think i'll have to either live with acne or maybe look into UV treatment or something. As I only get it on my back, I think the side effects are worse than the condition. The dermatologist really didn't clue me in on all of the side effects beforehand either......

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Mandy, my 24 yr old daughter has been on accutane for 5 months and her doctor wanted her to continue for one more month. She suddenly last week developed severe joint and back pain. When she called his office and spoke to his nurse about her symptoms, he got on the phone and told to stop the Accurane immediately. I only pray that her side effects aren't permanent.

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Hi dr. Steve. My face before accutane was ok, just have some pimples here and there. But my derm still put me on accutane. That time I didnt know what it is. I took it for 4 month with the dosage of 20mg then 40mg everyday. Then I stopped using it. After 2 weeks, my face grew so many small pimples, they are red and tiny. Now they left so many dark spots and some scars on my face. I think accutane is ruining my skin.

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There is a number of skin problems that resemble acne that is not acne. Highly unusual to have an acne outbreak so soon. I would schedule a follow up, if you don't like your current derm get a second opinion. Without knowing your weight (dosing is weight based) it is hard to say but your treatment course is short (usually 4-6 months). If you didn't take the medication with food (preferably with a decent amount of fat) you may have absorbed little which could theoretically be responsible for your breakout, it you are truly having one and not some other skin problem that looks similiar.

I'm curious, you say, " But my derm still put me on accutane. That time I didn't know what it is" I hear this alot. The phrasing of this decision process indicates no choice was offered, little education was done. I envision the doctor saying this is what I recommend and offering no choices which is seems like there was in your case if your acne was only moderate. Doctors are notoriasly poor communicatiors in my opinion. Would you mind sharing what your experience with this doctor was like as far as how he framed this decision with you etc.

Thanks

Dr. Steve

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Hi. My skin just had some pimples near my pms only. First time I came to her clinic, no pimples on my face.i just asked her to look at my face whether it has problem. Then first she gave me a tube , asked me to apply on face. My face turned red and dry. One more month, it grew many pimples but actually to me it was ok. I came to her again, she looked atmy face, and she just wrote the medicine, and said no pregnance during medicine without any instruction, blood test or anything. She just kept silent to me. Then i used it for 4 months, she just stop accutane and change to another med. i was angry becoz she didnt sayanything, just kept silent. During using the accutane, my skin is very perfect, no any breakouts during it. But after stopping accutane, my face breakout so many, iI cried many days and Im crying now. Why I seek to her clinic then now it ruins myface skin. Now I want to seek for another derm or go backto complain her, but I really lost trustin doctor. What I should do now? If you want to see my face. Dont hesitate to email me {edited for privacy}.

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Thank you for the information Bill. Always looking for new information. I would argue that frequency has to be in the picture. If only 1 in 50000 people have a certain severe side effect should we deny that medication to everyone or just do our best to diagnose this rare side effect. It is a questions of balance. Isotretinoin is what I consider to be a "higher level" drug much like methotrexate, prednisone, Enbrel etc as it has potential for wide-ranging side effects and needs monitoring. The difference in drugs being therapeutic or a poison is dosage. Most side effects are dose dependent. In my opinion dermatologists jump to the maximum of 1mg/kg way too much causing unnecessary side effect with only marginal benefit. I feel a better balance of effectiveness and side effects is.5 mg/kg or 30-40 mg for a 150 lb person. As far as suicide and depression goes, people with severe acne are at much higher risk of suicide and depression than the general population. Really nothing else works well for severe acne. Should we deny these patients relief if the frequency of a side effect is deemed to be extremely low? If you had to treat these desperate suffering patients every day you may have a different perspective.

Thanks again Bill. May take me a month or so to get to reading these studies but I really appreciate it. I don't search under pub-med specifically for only dermatology journals but that is what always comes up first for any derm subject matter

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From my own daughters experience, her severe rheumatoid arthritis didn't start until 2 and 1/2 years after she stopped taking Accutane. Since the acne was resolved, there was no need to see her dermatologist about the RA. We never considered it might be related. She was 18 at the time and has just started her junior year in college. My older daughter has RA as well and was diagnosed in her mid 20's. She also was on Accutane. No one on either side of my family has this and we've racked our brain trying to figure out why these 2 girls have it. It dawned on me that the only common denominator was that they both took Accutane. The pain is so severe she may have to drop out of school. It is not getting any better, only worse. She has been on methotrexate for 6 mo. which put her in remission but is now having a full blown RA attack.

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