Accutane Long Term Side Effects (Page 15)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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I wonder how many children and teenagers unknowing started there chemotherapy course today.
How many parents do you think would let there kids take accutane if they knew it was a chemo agent and had read through this entire thread? Provided there child's acne wasn't extremely severe I think I can come up with a pretty accurate number, 0.

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Hello Luis, thanks for your message. I am sorry that you are expericing the same joint pain. You have taken much more Accutane than me. My dose was 20mg but it lasted almost a year. I don't remember exactly because it was 6 years ago. I didn't have joint pain during the treatment. Well, I got Aquiles pain some weeks after taking the first pill, but I didn't relate it because back then I was doing hard jogging.

I think that I could also have synovitis. Since now they told me that my paint was due to tendonitis or bursitis. But could be synovitis like you. Did the surgery help you? I have this kind of pain in my aquiles, elbows and hands.

Another question, do you think that your paint is getting worse every year, or do you think it has become stabilized?

I suppose that you already have tried all kind of suppements.

Let's keep in contact. I am still optimitstic about finding a solution. I wish the best luck.

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Hi all,

I posted on here back in August after having taken Accutane for 5 or 6 weeks and I just want to let people know what iv'e experienced afterwards. I was concerned that I had joint swelling and pain in my fingers (on top of the usual side effects) so I stopped taking it. Bearing in mind I was on a 4 month course, I expected the acne to return, but as of now it hasn't returned like it was (perhaps not everyone needs to take it for as long as it is prescribed?). However, my fingers have only just returned to relative normality and I have some digestion problems, sometimes quite severe, that I never had before taking the drug.

It's hard to know what to do as it clearly affects everyone so differently. It seems my side effects are easing off now, but thats 4 months after stopping them, and I ended my course early. If you are having side effects be aware that they may be with you for a while after stopping the drug. Also, if you know you eat badly try improving you're diet (seems to help me), also Iv'e found that If I have a lot of dairy, I get acne breakouts, if I avoid dairy (milk in particular) it stays mostly clear.

Anyway, thats what I experienced/am experiencing. Hope it helps someone :)

Simon

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I agree 100% with hairgurl. I posted to this thread just a few weeks into my second course of Accutane (Amnesteem) which was just a few months ago, in June or July.

I was concerned about the joint pain, the exhaustion and the irritable moods I was experiencing after my dose was increased from 40 mg to 60 mg in weeks 5-6.

The side effects while taking this medication can be pretty tough however, for most, they are just short term. The positive long term effects of this medication offering clear skin far outweigh the negative short term effects. This is how we make most decisions in life.. determining if the good outweighs the bad. In my case, now after finishing my last dose 4 weeks ago, the good absolutely outweighs the bad!!!

My first course of branded Accutane was 10 years ago, I was 21, and I remained clear for 7 or 8 years without any negative long term residual effects.

My diet was terrible. I was constantly under pressure and stressed out at work and my skin started breaking out again a couple of years ago. Typically just 2-3 cysts but they were extremely painful and made me feel very self conscious and less than beautiful. In addition to the cysts, I had very oily skin and discolored areas.. red spots from recent pimples which made it impossible to go anywhere without a full face of makeup.

After trying multiple other options, I decided to start Amnesteem as a last resort for a clear complexion. It was the best feeling in the world to see all of the deep plugs and recurring cystic pimples start to come to the surface and clear themselves showing results pretty quickly.

I went to the max dose of 80mg/day for the final 2 months and the worst of the side effects were the dry lips and irritable mood. I didn't feel as care free as I typically am but my body was pretty stressed out from this medication so I understood why my moods were so irritable.

My joints ached when I worked out but I could still work out, just not as intensely as I normally did. I lowered the weight I was lifting and had to keep the impact on my joints to a minimum. I also took Calcium and vitamin D supplements religiously.

Now, just 4 weeks after taking my last dose, I feel my energy and my enthusiasm coming back! The dry lips are gone. My oddly pale Accutane complexion is gone and my workouts are back to the same level of intensity as before I began treatment.

It took 4 1/2 months to clear my skin completely but it feels really great now to have clear skin. My confidence is coming back and I can say that this medication can improve lives simply by making young people feel normal again. It may sound superficial to those who have never dealt with acne however, if you have.. you know what I mean. It can be devastating.

Now that my skin is clear, I can go to the gym without makeup.. I can throw on an outfit and not spend an hour covering discolorations and masking bumps on my face. I feel beautiful again. There is hope and whether you are considering this medication for yourself or your child or you have already started the medication.. just know that there are so many people who have benefited a great deal from this medication who do not share their stories as frequently as the dramatic "accutane ruined my life" crowd. It's a mindset, in my opinion. I am sorry to those who have suffered an experience different from my own however, there are success stories as well!

To maintain my clear complexion, I am sticking to a pretty clean diet.. mostly veggies, brown rice, whole grains and lots of water!! Salicylic acid peels and microdermabrasion keep the dead skin cells removed and I have also started taking a probiotic to make digestion more efficient (poor digestion can cause toxins to be cleansed through our skin which can cause acne).

Side note: In regards to the ulcerative colitis and Crohn's side effects, I was diagnosed with Crohn's just 6 weeks BEFORE my 1st round of Accutane. I had just had surgery for Crohn's so it was pretty severe but even after taking a full course of Accutane right after surgery (before Accutane was thought to cause Crohn's or cause complications).. I did not have any complications or flare ups. I am not convinced the 2 are linked, I believe it's more of an auto immune / inflammatory link since both acne and IBD are inflammatory conditions. Possibly genetic. Again, this is my experience and my own personal opinion. I am sure others differ from my own but it's ironic that I was diagnosed with IBD just before starting Accutane yet had no complications or problems.. now even after 2 rounds of Accutane.

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hi xavier i suffer from accutane sides like you

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stop now the treatment, the sides dont go way

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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.

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I was placed on Accutane around 16 years old..17 years ago. I feel very bad for anyone with horrific side affects. But I experienced the complete opposite result, I became happy, self confident and most importantly I became myself!

You see, severely bad and even moderate acne, can be life crippling! .... Example you're in middle school and everyone is starting to blossom.. except you, you get huge welts all over your face that you have to cake makeup on..no-one thinks you're pretty, the popular girls talk s***, and you for sure will never want to attend a pool party or sleep over..fearing that moment u have to take your mask off. And believe me everyone wants to see what's going on under that mask. You go home from school crying everyday.. wash that cake makeup off that beat up, acne ridden face, just so you can cake on that 15 th acne cream meds that of course aren't working!! Your face hurts so bad from all the welts and white head extractions..you go to sleep praying those huge boils are gone by morning..you cry yourself to sleep, but your tears burn down your face from all the med. Creams you've been using. That's my middle school snap shot in a few sentences.

Anyway.. after trying around 20 meds. I decided to visit this miracle dermatologist.. he said I was a perfect candidate for Accutane.. he went.over every side affects and made me go on two months of.other antibiotics before.I could.even be allowed to be prescribed Accutane.. after the two months was up and zero changes made from the antibiotic..I was finally ready to go on Accutane. Hundreds of papers had to be signed, blood work, pregnancy test..more paper work and being totally yelled at about the risk of pregnancy..I was finally on Accutane!! I blossomed and felt beautiful!! You now need to understand, this drug Accutane, yes CAN have severe side affects, but "I " and most of everyone after year 1996 should know all of the precautions! My mother and myself signed those hundreds of documents stating we knew!!

For myself it was worth any risk!!!! I was dying already.. I probably would have commited suicide with out Accutane. My only wish would be to have taken it earlier.. high school was a son of a b****!! So if you are being prescribed Accutane it's only because you exhausted all other means of medication to treat your acne. You seeked a solution. Solutions come with risks. But I also believe some of these claims are false. A money bandwagon. It's sad to see that our s***ty economic situation would turn people into computer searching legal suit seekers.. Not everyone posting is that kind of person, but you know who you are..

As for the truely affected people, that are really sufferings from Accutane.. I pray you get all the help and support you deserve. Let this be a lesson WE are OUR OWN best medical advocates. The doctor, the meds are not at blame. We signed those papers. Making false claims or going after a company that clearly lets you know.. HEY, This medication is so intense you have to sign your life away and get blood work to check your liver once a month!! Hmm.. I hope when my son hits middle school and his face is covered in huge red painful blistered bumps, that all these claims don't ruin it for him or any other adolescent/adult. That would be a damn shame

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I was sixteen, I signed a form. No warnings, no list of side effects. The doctor promised my mum it was a miracle drug. In the late 1990's we didn't web md. Good for you that you got to make an informed decision. Many of us didn't. Grow up

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The above was in reponse to a post that had a condenscending attitude towards persons with issues regarding accutane.

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Not a nice post. I took accutane in 1994 and the doctors did not say jack about it being a chemo drug and the only warning I got on side effects came from a tiny pamphlet with the drug. Back then they fixated on not getting pregnant. I have had mood problems (anxiety depression)ever since and have had face hair since in my 20's. I am 37 now and have had premature diabetic conditions since my 20's and am going through menopause at age 37. No one in my family went through these issues that early. I am of the opinion it being a chemo drug the high dose they gave me did have long term effects and possibly did some dna switch tripping. But I am not a doctor. I have just done a lot of reading about the drug.

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My discs too. Hang in there brother.

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"Drying up from within" is exactly what is happening with all my joints and discs.

Tess, I am very for your situation. I took it only 6 years ago and my life quality has decreased a lot. I am quite sure that I won't be able to go out from bed in a few years or even months. However please don't give up because there are thousands of affected people everywhere and we must continue helping us each others until we find a treatment to reverse its damn side effects.

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

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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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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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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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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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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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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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