Accutane Long Term Side Effects (Page 8) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Zac, look at Acne.org and their holistic/diet section on acne. There are many alternatives then Accutane. They may even have a thread on body acne and suggestions. Good choice to stop... Derm will probably tell you joint pain is common and will go away, that is far from true and you are still growing in which it could stunt your growth.

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Zac,
Please don't continue taking this drug. You are only 14 and your body is still maturing. If you are having pain in your back after only one week on this drug just think how bad it will get by the end of the 6 month treatment! Most people outgrow acne as they mature, usually by the time they are out of their teens. In some cases it lingers longer. Such was my case. I took Accutane when I was 24 for 3 months. I was supposed to take it for a 6 months treatment but, the side effects became too much for me. I just turned 54 last week. The quality of my life has been destroyed for the last 30 years. I have had bone and joint problems for most of that timeframe, specifically with my neck. More recently I have had issues with the joints in my shoulders and knees. Since I took Accutane I have trouble focusing and concentrating. My mind feels like I'm in a cloud alot of the time. I've had lots of digestive problems also since taking Accutane. My life was destroyed by this poison know as Accutane. Please don't let it do the same to you. Look for other ways to deal with your acne. Try natural treatments and watch what you eat. Avoid the junk foods i.e. sodas, sugars, greasy fried foods. If I could go back 30 years I would gladly take my acne problem back if I could reverse the effects what Accutane did to my body. Oh, BTW, I still have problems with acne sometimes. Accutane did not cure my acne problem. A pill is not always the answer to our health problems.
Ernest

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Allie... So when you ask a Derm " if i het joint pain how long will it last" and are told when you stop the medication the pains will go away ! What would you think?. 6 weeks on med when joint pain started. Stopped medication at 8 wks. Now 3 years later after stopping med & still have the pains plus many other side effects. And now just 20yrs old. You dont suffer with all these problems for no reason. Chemo kills fast growing cells ! Not cancer cells when given for Acne. Nerves are more sensative & are damaged, the body is very complex and sensative.. Ignorance is bliss

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Speaking from someone who was given Accutane in the 1970s, no we were not told about the risks nor were we able to do this kind of research that is now at your fingertips online. My daughter has acne and has asked me to let her take Accutane and there is no way I would allow it. I have IBS, chronic fatigue and joint and muscle pain. I also had fertility problems and numerous miscarriages none of which run in my family.

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***** RECOVERY STORY *****

I've got permission to post this story that I had in my inbox the other day. The individual wishes to remain anonymous and thus any speculations to who it is I will neither confirm or deny. However, take it for what it is - good f***ing news;

Thanks alot man I appreciate it! I owe my life to this plant which is why I now dedicate my life to spreading the knowledge of this amazing medicine. I never expected any of this. To take it back to the start I was *** years old I Was literally the epitome of an athlete and healthy quite like yourself as I saw you mentioned. The death pill accutane turned me into what I could only expect it would be like at 80+ years old, after 6 months of 40mg per day...if I remember correctly 1 poison pill a day. Still remember near the end of the death treatment I found one of those pills crushed with a sickly orange goo coming out. Later to find out this poison is chemotherapy originally designed for brain cancer, which I now know is a whole other fraud just like most of the 'medical system', but that's another topic. Back to the point. I remember in the summer of 2010 when I was a month or two into the poison I suddenly realized my libido was becoming extremely weak and my feelings were slowly dying. I didn't understand what was going on I was only focused on getting rid of the acne. Time went on and I got worse and worse thinking it was only temporary. Never could i have imagined what these criminals had put me on for acne. By the end of the poison I pretty much felt dead. Extreme fatigue, extreme brain fog I could not think normally, could barely make sense out of regular things, at this point I was completely impotent with no more feeling in my body. Complete loss of libido. No thoughts or attraction to females at all. Emotionally dead. My joints in my legs ached bad and made cracking sounds when I would move them. My eyes were red and dry and I had horrible night vision I couldn't see outside at night even though I always had been able to in the past. My lips had a big split top and bottom from being so dry and cracked. They would split and bleed daily. I still have the scar lines from it. Basically the poison made me feel like I was no longer human. I don't know if I am forgetting anything but I think that about covers it. It was around 2 years until i really began cannabis treatment. I was feeling worse and worse no improvement at all to the point i was basically bed ridden with no hope. I eventually started off vaping and over the course of a few weeks my brain fog finally was clearing and I was getting some feelings back which was very exciting, but it wasnt always too consistent. The reason being i believe is the amount is very little being consumed compared to an oil tolerance. Also i feel that vaping/smoking is very mental so I believe most of the cannabinoids go to the lungs/brain rather than the whole body compared to ingesting oil. But it certainly began to clear up my mind. I began using RSO months later I believe a bit more than 1 1/2 years ago. Within the first few days i knew this was it. I took it very slowly and only increased my dose as I was comfortable but within a few weeks I was beginning to really feel the true healing power. I was feeling alive with energy each morning and I finally began healing. My mind was clearing up even more and feeling and emotion was returning. This is dated around a month or so. I no longer had joint pain and my night vision had returned.I continually increased dosage and I continued to feel even better and better. Every symptom just continued to feel better by the day. Libido and feeling continued to improve as did my energy and mind. Another thing that I think helped a lot is a few times a week i would mix some rso with coconut oil and put it in a condom and wear it. By this time it was around 3 months into treatment. I estimate I consumed around 50 grams of oil or about 12 ounces of bud. At that point I felt completely cured and back to normal. I continued to ingest the oil and continued to feel great. I have used the oil on and off since then as maintenance doses and I still feel great to this day. This oil is truly amazing. Throughout the course I didn't write down dates or measurements so it is mostly estimated. I continually listened to my body And feeling as I went along. That is the most important thing to remember on the oil. Take it slowly and build a tolerance. Once your tolerance is high after a few weeks or months the healing really begins. Start very small and give yourself time to build tolerance. 1/2 rice grain every 8 hours rick Simpson recommends, doubling dosage every 4 days. I started a bit slower but eventually built it up. We all have different tolerances and healing rates so always go at your own comfortable pace. It is important to use indica or indica dominant strains because they provide the best healing and rest. Many people have schedules so if you can only use at night before bed that's still okay. Sativas are not good because they are very mentally energizing and not suitable for healing the way indicas are. Some indica dominant strains have a bit of sativa enough to make a nice balance, but you are looking for potent sedative strains that make you want to sleep. These are the real healers. A few strains I used were afghan kush(indica), northern lights(indica), grand daddy purp(indica), white widow(indica dom), skunk #1 (hybrid). The indicas are definitely best but the hybrids were good to add in the mix for some euphoric good feeling. The best oils are a mix of strains which is what I did. Don't worry about cbd, simply go for potent sedative indicas and you will be good. I did not grow the bud I used for these oils, but I have knowledge on growing if you are looking for help. Growing certainly solves many issues in finding this medicine but sadly it is a risk as we know right now. I hope this was detailed enough to be useful and will certainly answer any further questions you may have. I apologize if there isnt a lot of detail but over my course of helping I didn't keep track of much besides how I felt and continued to improve over time. I would love to add more detail but I have been typing for about 2 hours now on my phone because I don't have a computer at the moment. I can't think of much else off the top of my head but Im more than happy to continue to chat and answer questions or help in any way I can. P.s. I tried finding a lawyer for a legal suit about 2 years ago but no one would take on the case unless symptoms included IBS or a few others... thats the corrupt system for us. I don't have money for a lawyer so I don't know how realistic suing actually is for me but I am still trying to collect info in the meantime. Very happy to talk to you as well man it's been an unfortunate part of our life but there is certainly a bright future ahead!"

That is very positive news if you ask me! But again due to this individual wishing to remain anonymous I would rather individuals not publicly speculate as to who this individual is on public threads.

As some of you may have seen before, I truly do think this may be the answer to our problems. There's the anecdotal evidence, the science and my own personal experience too. I hope this can give hope to those with long term issues.

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Haha they dedicate numerous years of there lives to line there pockets with there patients money you ignoramus. Selling chemo drugs to children with mild acne is ok to you is it? 5-10 years ago when a lot of these ppl myself included took accutane after reading through the nice glossy leaflet provided by Roche they were assured by there oh so caring dermatologist that the only possible long term side effects were hairloss and IBS. Go join a pro accutane group, I think you'll fit in better there.

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Dana,
I took Accutane 30 years ago as a 24 year old male. I had all the typical short term side effects, i.e. dry skin, chapped lips, nose bleeds, that stopped after I discontinued using the drug. My treatment called for a 3 month cycle on the drug, a 2 week break and then a second 3 month cycle. I was only able to complete the first 3 month cycle. I decided the short term side effects were too much for me and stopped the treatment. Now 30 years post Accutane treatment my life is a constant roller coaster battle. I have so many health issues I struggle to live a "normal" life. I have had bone and joint problems for the last 30 years since Accutane. I have Arthritis in my neck and spine. My bones and joints making popping sounds often. I've had shoulder pains, wrist pains off and on again. Seems like the problems shift around to different parts of my bones all the time. I've had many digestive/ stomach problems since taking Accutane, ulcers in my esophagus, acid reflux, IBS, issues due to intolerance of certain foods I eat that I had no problem with before taking Accutane. Prior to taking Accutane I had a great memory. Since taking Accutane I have trouble focusing on reading, concentrating on things. It's like I'm in a cloud at times, foggy like. I have had trouble with Depression also. Before taking Accutane I could eat all foods with no problems. Now, I have trouble with many foods, dairy products, spicy foods, fatty foods. Recently, I have become gluten intolerant. I read on here that other Accutane users have developed problems digesting gluten. My list goes on and on. I don't sleep well most of the time due to my neck problems. I have that "hollow look" in my face other Accutane users have spoken of. It's all really depressing. If I could go back 30 years I would gladly take my acne problem back. And btw, I still get acne sometimes. A couple of times the acne has formed cysts that I had to have removed. Accutane is not a guaranteed cure for acne! I would never recommend this poison to anyone! Think long and hard before you continue use of this drug anymore.
Ernest

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Bethany,
Please stop the drug now. If these side effects are coming from Accutane, they will just get worse. If you stop now, you may be able to cleanse yourself of this drug and be OK. Just my opinion.
Scott

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I am 23 years old. My dermatologist introduced acutane to me to clear up my stubborn acne that always seemed to come back since the age of 16. Although some people do very well on acutane, let me just say I did not. I lasted a month on accutane until I ended up in the hospital with acute pancreatitis, as well as an inflamed colon. My gastro doctor immediately knew it was the acutane once I told him I was on it. I was in the hospital for a week in the worst pain I have ever felt. I now suffer from digestion problems & there are many things I can no longer eat. Acutane is not worth the consequences you may encounter!

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The information is just now become available. I took Accutane in it's experimental stage; and now regret it. I have severe problems with pain, gastrointestinal and fatigue so bad, it is hard to do things. There was no information available at the time I took it. Don't judge people for wanting to try and help their kids by believing in a doctors advice. There were many suspicions about this drug 20 years after it came out, but nothing was out there because the legal suits and drug companies wouldn't allow it. I would not and have not given my child, who also suffers from acne, this medication now that I know what it does.

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I don't like to be the bearer of bad tidings or gloom and doom but, I must tell everyone reading this that the long term side effects from Accutane poisoning don't go away. They just get worse with time. I can testify to that after taking this drug/ poison over 30 years ago as a young man of 24 at the time. I took this poison for a total time of 3 months. I started a second round of treatment which lasted for about 2 weeks at which time I decided that the short term side effects(severe nose bleeds) were just not worth it. Thank God I didn't continue the treatment! I would probably be dead by now if I had. I only wish that I had NEVER heard of this poison! My life has been a struggle for the past 30 years post Accutane treatment with all kinds of health issues. My health problems started during and continued after stopping the drug. I've had bone and joint problems, pain and degenerative disc disease, which have progressively gotten worse over the years. I battled depression after the treatment accompanied by weight loss. I've had GI problems including ulcers, IBS, acid reflux, hiatial hernia. I developed food sensitivities to things I ate in the past with no problems. Accutane has affected my ability to concentrate/ focus on things in my thought process. Writing this stuff now is taking me forever to gather my thoughts. It's a struggle. Sometimes I feel more alert at thinking but most of the time it's hard for me. It's like I'm in a fog. I never feel really rested and energized after sleeping like I should/ used to. I miss that so much. It seems that the last couple of years the Accutane side effects have gotten alot worse. On a typical day for me after I get out of bed, I shower and get ready for work. I have to look at myself in the mirror to shave of course. I see my red face in the mirror and the way my eyes are sinking back in my head. That's the "hollow" look that I've heard that Accutane users develop. It's true. I know personally. So my face is red and all around my eyes is kinda white like a raccoon. I look at myself and am self conscious of my appearance. I go to work and people ask me if I have been in the sun. No. They tell me I look tired and do I feel alright? I get alot of doubletakes (second looks) from people. I know what they are thinking. I wish I had my acne back now. It wasn't nearly as bad as this! I have developed gluten intolerance in the last year. Now I have more limitations on my already complicated life. I'm 54 years old and have never been married. And why? because the last 30 years of my life have been dealing with the results of a terrible decision on my part to take Accutane. Basically, I have lost the last 30 years of my life. I lost my youth and health to some drug company's greed to make money off people that are dealing with the issue of teenage acne. Young people that are at a vulnerable time in their lives making decisions that will affect their future. I hope anyone that is thinking about using this poison changes their mind after reading this. You need to just suck it up and tough it out. Acne usually goes away with age. I know there may be a few exceptions to this but, not many. Don't take this drug!!

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God forbid anyone read the pubmed articles concerning Accutane/isotertinoin that were originally published OUTSIDE of dermatology journals. No rational person would take this drug if they could make sense of half of the basic scientific research. ...There is enough literature with negative implications to fill an entire page of this thread with links if they were allowed here.

Dr. Steve, I truly hope you do the right thing and file a MedWatch report when a patient complains of symptoms developed while taking Accutane, rather than convincing them it absolutely must be something else causing them.

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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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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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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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In my opinion the majority of the people who use accutane dont have long term sides but there is percentage , (0,1% or1% or 10%???) that have long term sides, who knows how many?

Accutane is a very eficient drug, I agree with you, it is near a miracle drug, all people who had acne and used accutane knows that... I wish someday someone invent a "accutane" without sides or a topic "accutane" that is eficient like the pill "accutane"

I saw a pattern in this long term side patients:

1 - Usualy they use high doses protocol 60, 80, 100 mg.
2 - They use accutane for long time (more than 4 months) or doing several treatments.
3 - Doing accutane while doing physical exercise.

Using accutane, every year, like that protocol you are doing is not wise, it is "playing with devil"... Stop now that, Not worth the risk...

I understand your suffering... I had pretty bad bad cystic acne in the past , I had acne in my face, neck, shoulder, back,chest, inguinal region, legs and arms, I was near suicide because of that, accutane was the only solution to me.

but why use the doctor prescribed 60, 80 mg in my case? why he did not recommend me not to exercise during the treatment? Now I had near no acne, but with joint pain all time... I cant exercise anymore... Its sad...

My conclusion is that Doctors are not educated enough about accutane sides...about the dose to use... to stay with low dose for short duration... to tell the patients to stop the treatment if they have some minor joint pain, depression or digestive disorder... to not exercise during the treatment...

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I have been part of and reading this discussion for almost a year now. My initial interest was prompted by the guilt I feel because I was the one who took him to the dermatologist and paid for her services with my health insurance. And then I saw him lose his hair, bear muscle/bone pain, have dry eyes, lose the stamina for activity he once had, etc. There seem to be hundreds of lawyers advertising their services on TV for mesothelioma, lead paint and such: there seem to be hundreds of teeners affected by the use of this drug: how do we get them interested in the liability for the damages caused? What does it take to start a class-action suit? Why haven't the makers of this drug (were there more than one?) been asked about their responsibility re the futures of their former clients?

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