Accutane Long Term Side Effects (Page 41)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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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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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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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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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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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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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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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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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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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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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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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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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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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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Mitch - Has he been checked for Lupus too as Sjorgren's and Lupus can mimmick eachother and most time if you have one you have the other.

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Oli girl. All his bloods came back normal but they don't tell you what they are looking for apart from , liver ,immune system attacking itself etc. These tests weee done over 7 months ago. We recently saw Rheum but he didnt do any bloods, nor check his joints. Last time we saw himhe said my son had Hypermobility in his joints. My son has just noticed he can move his kneecap and his forearms feel like there is no muscle. As he was discharged by his Rheum i have called to see if he will see him again but we may have to be referred back by our Dr. Also in UK if you go to different hospitals thet use a different database & do not communicate. Also we moved home and family doc and the new one didnt have my sons notes wen we went to see him. I have made an appointment so i can get his vit D, B12 & Seratonin checked.
Thankyou to everyone for your help and advise, it is much appreciated .

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Kimberley.. Thankyou i have read your reply and have made the appointment to see his Doctor. I will mention the Vitamin issues and also see they will check his Seratonin as he has Mental health issues too at this moment in time. There are so many different issues you Guys are having and i send my Best to all of you Eat well and Be Strong x

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Nancy.. I understand what you are going through as a parent and i really feel for your son and everyone else thats taken this CrAP .. My Heartfelt wishes to you and your son for the hell that you are going through xx God Bless

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Hi Alegria: My son has had 2 xrays done on his spine, the last one they said was that L4 was out of whack, then the next xray said it was Fine... His is not so much in the Tail Bone area, more up in the spine area, say area of Kidneys but in the spine...They claim his Back pain is linked to DEPRESSION, yeah you read that right.. Everytime we go to a NEW Dr. it;s the same ole Song & Dance well you do suffer with Depression and Depression causes Aches.. I will ask the Rheumatologist to look into the AS, thank You for this info & Suggestion, I did go back and read your posts. I am not sure how far I will get with the New Rhem. (Just saw him the other day) He seems STUCK now with the Sjogrens at least he isn't saying DEPRESSION..But still the Sjogrens scares the HELL out of me...Yes I also know it could be Lupus, although they claim they checked him for that and it was Negative....Yet he had a Positive Speckled ANA Pattern.... The Lip Biopsy on 3/16, I guess will reveal if it is Sjogrens, I PRAY it isn't....I am HAPPY that your son is doing BETTER now that he is taking Meds for his AS, VERY HAPPY to read that...(Your SON gives me HOPE) I hope ONE day ALL of The PEOPLE who took this POISON will find the answers and be able to be TREATED as your son is being treated.... GOD BLESS YOU and Your SON... Thanks for HELPING others, it is appreciated as you know... I will keep you updated.

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Hi Mitch:
THANK YOU for your Kind words, they HELP, means so much. It's comforting to know there are other Parents out there like me... I know ONLY a Parent dealing with watching their Child SUFFER from the Effects from this POISON can really Understand..I also feel for You & your Son having to go through this NIGHTMARE... It's TOUGH to watch your Child Suffer, TOUGHER than Anything I have Ever done in my Life. I keep SEARCHING by going to all kinds of Doctors & I will not STOP until I find an Answer. I have brought printed out POSTS from people who took this DRUG, with ALL or MOST having the SAME symptoms...I take the Paper with the Posts and said to them "DO YOU THINK THIS IS COINCIDENTAL"? It;s From the ACCUTANE... I get little reply.. So FRUSTRATING but then again ALL of Us on here know about that. Thank You again Mitch, I PRAY for You & your Son that You will find the answer, get the right Diagnosis & Meds and your Son will be able to LIVE a FULL Life again... and You too Dad, I know "WE" as Parents Lose OUR lives along this Horrid Ride with our children. GOD BLESS xx

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To ALL of You... I forgot to mention about Vitamin levels with my son...His D is Very Low they have him on a Prescription Vit. D 1000 IU a day. we FINALLY got his Vit. A levels checked, that was like pulling teeth from a tiger, every Dr. I asked they said they are fine, he would be orange if he had excessive Vit. A, I finally got it tested for him and they were NORMAL, I was actually shocked thought they would have been high...Anyone else on here have the Vitamin A level tested????How did it come out??? Now I have a Question for ALL of you, does anyone who took the POISION Accutane take a Multivitamin or do you stay away from it due to the Vit. A??? I know my son would NOT take the Multivitamin cause he thought he still had HIGH Doses of Vit. A but now knowing he does not have high levels, he will take the Multi.. Thoughts?????? Another question, does anyone suffer with Facial Redness, SEVERE Facial Dryness and Tiny Bumps on Face & Back?? Anyone know of a really Good Hydrating Mositurizer for Sensitive skin to apply to the face? Stay STRONG Everyone, I have HOPE that ~TOGETHER~ we will find the ANSWERS... GOD Bless.

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