Accutane Long Term Side Effects (Page 57)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Wendy,
I have been contacted numerous times before somehow found on this thread. I am not sure how. Get back to me on this thread and let me know how you made out.

Best Wishes,
Scott

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Scott: How can we get in touch with you. My aunt could have written the description of your son. I think it's important we get together collectively to compare situations and discuss everything.

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Nancy, severe lower back pain? Does he ever describe it as being in his tail bone. I can't believe your Rheumy hasn't looked at the possibility of ankylosing spondylitis. Read my past posts and also my responses to Mitch. It describes A.S. My son had/has severe pain in his lower back and shoulders radiating down his arms. Also extreme pain in his chest when he sneezes and the pain radiates down his arms. Listen, your Rheumy should xray his lower spine and hips for Ankylosing Spondylitis. It is easily treated. If left untreated, his spine can fuse which is when it gets even more painful. Yes, my son now takes a medicine but it has made him a new person without pain. It is NOT a pain medicine so don't worry about addiction. Be careful of the malaris drug. I wouldn't advise taking it. Research the complications. Please please press your doc to examine for A.S. If he is not an expert in A.S., I would find a rheumy who is.

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To Mitch & OTHERS on this Board:
Please know I FEEL your Pain with what you are going through with your son, I too am on this EMOTIONAL Rollercoaster from HELL...I have written posts about my son's Physical & Emotional Problems since taking this POISON... He has had Severe Lower Back Pain, Muscle Aches, Twitching, Insomnia,Severe Dry Nose, Eyes,Skin and Mouth. Elevated ALT levels,Inflamation of Esophagus, High Acid Content Upper Stomach, High Cholesterol, High Blood Pressure, Glucose problems (Pre-Diabetic) also Suffers with Severe Anxiety and Depression. We have been to SO Many Dr's over the past few years, we get this from the Doctors: Maybe it;s the Thyroid, Pheocromocytoma (Tumor on Adrenal Gland) Dysautonomia, Autonomic Disorder, POTS, Celiac Disease, etc..... Today we went to another Rheumatologist after the Eye Dr. he saw last week mentioned the Word Sjogrens due to the Dry eyes. The Rheum. feels it could be Sjogrens. He did Blood work and scheduled my son for a Lip Biopsy next week as this will CONFIRM the Diagnoses.(Autoimmune Disease) that would EXPLAIN a lot of my sons symptoms and perhaps your son also. I told the Rhem. about the Accutane and he said that Vit. A in large doses can in face affect the Immune System... There was my ANSWER.... I am Praying that my son does NOT have Sjogrens as it can eventually effect other organs he feels it may have gotten to the Lungs in my son as he had Pleurisy 2 times in a year. It would explain the Muscle Acheness,Dryness, Fatigue, Depression, etc... My son is now on High Blood Pressure Meds, a Antidepressant & Anti-Anxiety drug. We FOUGHT with him Long & Hard to take these drugs as he was like your son & many others that DON'T want to take any drug after Ingesting the POISON Accutane... They do help somewhat but not completely. If my son does have Sjogrens the Rhem. said when the symptoms get worst they treat it with a Anti-Malria drug, which also has SIDE EFFECTS...I FEAR my Son will NOT take it if it should come to that. I do not know what the FUTURE Holds for my Son or Your Son or Others on this Board. I PRAY that there will be a ANSWER and a FIX that does not contain MORE HARMFUL Drugs being put in them... I am very Depressed typing this although I am a Step Closer with a Answer after all this time, I am not sure I like what I am hearing... GOD BLESS YOU ALL!!!!

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Hey Mitch
I just read your post about your son's more recent problems and a few months ago I actually started going through the same things I was having severe chest pain, and problems with my motor skills, communicating and thinking that were so bad a neurologist actually tested to see if I had had a stroke. I was also getting serious body aches and shaking so bad two drs I saw thought I had parkinsons. My gp did bloodwork and saw that my liver is obviously not in great shape, it started failing when I took the accutane, but she said it wasnt so awful that I would be having these issues yet, she also said I have a severe vitamin d defiency which can cause a lot of these issues. She actually also sent me to an infectious disease dr, which may be something you want to look into, because about a year ago I had mrsa and my immune system is so shot that it almost killed me and she wanted to have someone check up on that and both drs do seem to agree that since I am so immuno-compromised my body is reacting in these kind of ways to every little infection. They also found a thyroid disorder which absolutely can cause every one of these symptoms and are now sending me to an endocrinologist, they are also going to check my b12 level, which I guess causes these kind of things too. I dont know what theyve checked your son for but these are things to maybe also look into and I have found with these issues you have to be really firm with drs as to what you want because they're not always as thorough as they like to believe they are. I really feel for you guys I know how frustrating it is to be sick and how not be able to express it or explain it the way you want just makes it a hundred times worse, but I am getting there slowly and I'm sure your son will too and explain to him sometimes you do need to take medicine! I hate putting anything in my body now but with the proper vitamin and mineral supplements and the right kind of prescribed medication you can feel so much better!

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Mitch, try to take your research regarding ankylosing spondylities to a Rheumatologist and get him to really examine your son and take xrays. My son saw 12 rheumatologist before one finally diagnosed him and got treatment. Remember, if your son does have A.S. and is not treated, he can really suffer permanently. If he is treated properly, his pain can be eliminated. My son has had most of his symptoms irradicated. He takes an injectable medicine called Enbrel. So far, so good. He feels normal now. He tried to go off Enbrel, but all the symptoms return after about 6 weeks without medicine. The key is to find a GOOD doctor. There should be some lawyers in the U.K. that will fight this demon. I'll ask the attorney we went to. Still don't know if they'll take my son's case tho. I'm trying to explain to them how devastating the "muslce aches and pains" are and they deserve just as much attention from a lawsuit as Inflammable Bowel Disease. But what does a mother know?

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Hello Mitch UK. hows it goin? Hang in there.. My brother also went thru a very bad ordeal. He went thru some form of schizophrenia and was doing all sorts of weird stuff.. had a hard time expressing himself in the beginning and he couldnt think straight also. I dint think in the beginning that the prescription drugs that the doctors were giving him such as lexapro and olanzapine were going to help him but i believe now that it did. since he took these, and watched him for many months, it seemed to have helped him get back to his feet. He is able to sleep at least. When he doesnt sleep, he is really bad the nxt day. We had to make him understand that taking medication to counter what this chemically engineered drug called accutane did to him. and these meds the doctors gave him will help him. It will take hard meds to counter what harsh stuff accutane did to the body. there isnt much choice i think. since i noticed that we dint make him take anything for 3 months and he just got worse and worse. So the more sleep and good food like vegetables he ate, the better he got mentally. try talking to your son about seeking help for his mental state. I am thinking that the longer it is he waits to take something for his depression, the harder it is for him to recover coz it took my brother more than 6 months to recover. I would say that he still isnt 100 percent well but at least he has had some form of recovery mentally. I hope your son agrees to take some meds for his depression. tell him that many people take anti depressants for major depression. if he doesnt get sleep, it gets worse. so even just a simple sleeping pill could help him im sure. God help us all.

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Chemotherapy drugs can produce true compartment syndrome. Alternatively, extravasation of these drugs can cause pain and swelling that mimics compartment syndrome.

emedicine.medscape.com/article/307668-overview#aw2aab6b2b4

Sorry to hear about your son!

By the way I tested positive for type 1 diabetes antibodies at age 35 really?

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Allegria.. thankyou for your replies.
Unfortunately i am in the United Kingdom.
There is supposed to be an Accutane Action Group but i cannot seem to contact them. I have mailed them and sent a letter but have had no reply.
The drug is complex and i did contact a lawyer but they weren't very helpfull .

Good luck i hope you manage to get some justice. let us know how you get on

Regards, Mitch UK

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Scott .. my heart goes out to your son , yet another horrific blow for him and your family.
According to ehealthme.com there was 21,162 reports of side effects using Accutane.
What the Hell are the Governments and these companies playing at ?
Such a Sorry state this world is ; making money from peoples misery that they even cause in the first place .

Allegria ..thankyou i have looked up the AS and my son seems to have many problems which are related to this nightmare of a disease. My heartfelt wishes to you and your son.
Heartbroken and Outraged... what else can i say !

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Alegria. Thankyou for that. My son does get chest pain too. Last 2 days hes been geting more pain in his head and his body starts to shiver as though he's in shock. He says its affecting him mentally, he cannot say what hes trying to say and feels hes not getting enough Oxygen. Wen sat up has head hurt but laid down he felt cold in his legs, light affects his eyes. He also has pain in the forearms and hands . He has said before He doesn't think the same as he used to. His brain is being affected and we know this can happen although i have read that this has not been proven. He's not sure if its a Migraine as he never had them before. I feel sick to the stomache as i hoped he was getting a little better as the pains were still there but the head pain & mental side of things i thought had subsided. Then Wow its back again. His Rheumatologist has just discharged him and said " hopefully he'll recover but it could take 3-4years"
Reading others posts his future isnt looking very good and im so sad for him. 8 weeks of this Drug has RUINED my Sons life and he's only just turned 18. He been home. Since Feb 2011 as he had to quit College. I am at my Wits end . Seeing your Child in Pain and not been able to do anything is Soul Destroying !
Being able to Come on here & know were not alone is a small comfort . As the medical people in the UK don't want to aknowledge what is going on . I am grateful i can communicate with people that know what i am talking about. Thank God for the Internet , how else would we know we are not alone. God Bless everyone suffering x

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Mitch, by the way, my son's pain started in the back, hips, tailbone and shoulders. But it seemed to also include every fiber of his body - like when we'd drive over a bump in the road or he'd sneeze, the pain in his chest and arms would be excrutiating. I would definitely have your son checked and xrayed for ankylosing spondylitis. Most doctors miss it tho so you need a really really good rheumatologist that has treated Ankylosing Spondylitis and can recognize it.

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Mitch, that's not true about being unsuccessful suing. I'm communicating right now with a big law firm that has won millions against the pharmaceutical company, but so far it has only been successful for victims with Inflammatory Bowel Disease. I'm trying to get that to sue for other immune deficiency problems and particular for Ankylosing Spondylitis. I should learn their decision next week. I've already told them I'm communicating with others who suffer awful joing and muscle pain. Doctors hate to admit it was accutane, but one of my son's doctors said it was definitely accutane. I'm so sorry to hear about your son. He needs a really good rheumatologist. What part of the country do you live in? Maybe I can get you a referral.

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Hello All,
Has anyone been told they have Compartment Syndrome. Signs of Compartment Syndrome are not being able to lift you foot or leg after walking, kicking a soccer ball, basically any activity that involves using your legs. Pain in legs after use and unable to lift foot for 5-10 minutes off floor are a few symptoms. Last summer my son was operated on this in his right leg. It is very rare and specialist said it comes from over active use of legs like sports, gymnastics. Operation did help him but seems it has it in other leg too We have no idea why he had this because he has not been active in sports etc in the past 6 years. Please let me know. Thanks !

Together we are strong,
Scott

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Alegria, thankyou for your reply. I am so Angry at myself for taking him to the doctor in the first place. I tried to keep him occupied playing cards last night as the light was hurting his eyes and he was really aggitated as he cannot sleep and does not go anywhere which is not normal.He is lethargic and depressed with his situation. I feel so helpless as im sure everyone else does . This affects his state of mind and i dont know who to turn to for help. The rheum wanted him to take anti-depressants but he refused, and who can blame him !

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Alegria. 6wks on the drug he started with joint pains,by 8 wk it got worse so he stopped taking it ,which was Dec 2010. Now 13 month later he has joint/ bone pain mostly in his back,knees , shoulders. Hes getting sore eyes again & hot sensations in his head . He feels cold & is very aggitated. He has insomnia & cannot be in company with people chatting etc,. The Rheumatologist said last wk its either a reaction to a viral infection or the drug that has caused his problems. They just do not want to Admit its the drug. This dtug starts off a reaction whivh it seems cannot be reversed ot switched off . They still give it to our children . His Derm was a complete Ass. & said we can't Prove its the drug. He also said people in USA have tried to sue but were unsuccessful. My son was really upset and really angry by what he said.

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Mitch, I understand. But if he has pain in his hips, tailbone and muscles and it is Ankylosing Spondylitis, going untreated will cause more permanent damage. How? It is during flares that the spine fuses, which has a crippling effect. So the medicine keeps him from going into a flare. The RX is NOT a pain killer, neither is the medicine addictive. My son would rather not have a fused, frozen spine on top of the pain. That is what doctors told my son and myself. If he doesn't have hip/spine/tailbone pain, then he probably doesn't have A.S. I'm so sorry to hear of your son's health problems. Have the doctors said it is due to accutane?

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Alegria , thankyou for the info.. since takeing the Isotretinoin my son will not take medicines or have a bone scan. And he has just turned 18 so it is his choice. He would not take pain killers and he was suffering v.bad with wat they thought to be Intercranial pressure on the brain. his body was shaking horifically. He has started today with headache and possible migraine but has not yet taken the nasal spray he ended up using the last time this happened. And that was after 2 days in hospital suffering. I am so scared of what might happen again to him. The physical and mental trauma he went through last year was heartbreaking to watch. Other people Do Not understand. I had tried to contact Accutane Action group but no one replies to my emails or letter i sent to them .

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Mitch, if your son has joint and muscle pain, check out ankylosing spondylitis. Try to find a rheumatologist in your area who will take some xrays of his hips and spine. My son experiences excrutiating pain, but under a doctors care for A.S. and yes, more medicine, he is basically pain free. He does show some spine fusion and when A.S. victims have a flare is when the spine fuses. You don't want that. You must keep him from going into a flare resulting in permanent damage. Do some research on A.S. and good luck.

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Scott.. what can i say but Excellent comment.
People that haven't suffered in some kind of way are very lucky.
Maybe the woman with her ridiculous remarks is writing this on behalf of Roche and is just a phoney..
I recently came into contact with a guy who was on a trial in the UK some 20 years ago and he DID get the Joint Pains etc. He was on Accutane and was aslo given evening primrose at the same time. He said the pain was quite bad but he continued the full course. Luckily for him he recovered after stopping the drug. I asked if he had children and he said yes.
On the leaflet that comes with this Poision it says upto 30 % get joint pain but does not say how long for.
WE all KNOW as Parents or SUFFERERS that it is this CRAP that has changed our CHILDRENS lives ans some have LOST their lives.
These maybe RARE World wide cases but some GREEDY company found a Niche in the market when they noticed in CANCER Patients that their skin looked good. They saw an Opportunity to make Money and that is the ONLY reason they give this POISION to People ! FACT
For the IGNORANT people Accutane kills the dividing cells. If you don't have bad (cancerous) cells what the hell do you think it is killing. OUR Good cells of course.
UNLESS you live with a LOVED ONE who like myself has watched my son since having taken this for SIX WEEKS and started with Joint Pain, and the rest that has followed. You know NOTHING !

GOD Bless ALL the People Suffering at the hands of this money making POision

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