Accutane Long Term Side Effects (Page 28)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Hello Robert,

Thank You so much for sharing your Accutane long term side effects in such detail. In your reply, like so many others, I drop my hands to my side after reading your post and I have to take a minute to pull myself together searching for words to reply back with that can be of some medical help, leads or at a minimum, inspirational. My prayers are with you and the strength you have to continue working and making the best of your life show very strong character and I am sure you are a inspiration to others.

Not that it will make your life better, but if you haven't already, contact a Accutane and its generic brands law firm to possibly get help with your medical bills and possible future health and finance situations. Because you have Crohns, you may have a case against the Pharma company that made this drug. Start with Hook and Bolton out of Florida, and if they can't help, keep on looking. Its my understanding the statue of limitations is being lifted in some cases due to the fact it may take years before someone is diagnosed with IBD.

I personally don't experience any long term side effects myself, but I watch one of my three sons go through similar health issues. It would have been easier on me if it would have been me that suffers from all his health issues then him. I fill so helpless at times and pray to God to take his pain away and give it to me.

. He just had chronic exertional compartment syndrome surgery 21 days ago on top of his daily aches and pains he lives with everyday of his life. He claims pain meds he took for his post operation pain do not even help his daily bone and joint pain. He also used to play High School sports in football and track and today, can't last longer then 10 minutes going at a slow speed on a treadmill. Like you, he had such promise ahead of him as a athlete.

He is so sick and tired of dealing with doctors and even lawyers that haven't help him to this point. Next step is for him this month is to swallow a camera pill to see , even after a colonoscopy, why no one can explain why he occasionally has blood in his stool.

Like you have said, We all must find a VOICE and stick together until the generics brands of accutane like amnesteem our taken off the shelf's in the USA and accutane is taken off the shelf's globally.

Nothing will change in the USA until the FDA is investigated and more studies are done on the long term effects of these drugs. I filled out my complaint letter to the FDA over 2 years ago and even after me calling them 3 times, I still have no idea if they even read my Med Watch report. SAD!

I did know the risk and read the paper well before I signed it to have my son placed on Amnesteem ( Accutane) but I was told any side effects he may have would go away after he quit taking the drug. I was lied to by my dermatologist, my PCP, until 2 years later my PCP admitted he did not prescribe accutane/amnesteem to his patients due to possible side effects. He did not hesitate thought to send my son to a dermatologist to be place on it for 6 months. Shame on the doctors that turn their backs , lying straight faced to a patient as they write the script for the drug. We have heard this line twice by 2 of the specialist we have seen over the past 6 years" My wife, children have all taken accutane and they are fine today. I would bet they would never let their love ones touch these drugs. It is so sad to think about all the people that have taken these drugs over the past 30 years and had no idea why they developed IBD and 1000 other life changing side effects.

Best wishes Robert and keep you comments coming. Thank You for being a part of this thread,
scott

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Robert,
Forgot to tell you this thread was started on May 28, 2009. When I sat down and started this thread, my wish was only to help one person or parent be able to find this site and help make them take a closer look at Accutane and its generics before they made the decision to take the drug. 540 reply's later, every post left on here has helped with the pros and cons. We all must continue to tell our story's to help others in so many ways.

Have a great day ,
scott

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Robert, My heart goes out too you! I at the age of 30 developed severe osteopenia and shrunk also from Accutane. I have massive tendon problems and tendon problems that nothing helps. I just recently developed a rare tendonitis extensor digitorum brevis in the ankle/foot on left side now. I back on steroids which sucks cause it's the only thing to relieve the pain, but have to be careful on the osteopenia...Uggh...Scott how did your sons surgery goo
Hope all is well with everyone - Jen

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HEllo Jen...
YEs..the Tendon pulls are incredibly painful....I am not all that Athletic....anymore...as far as participating in Sports ( unfortunately)....In my mind...I sometimes Believe I can STILL do all the things I once did....
I DO still have to climb trees in my Work..to cut them down...Often...just reaching a bit too far..for another grip or a Higher branch...I feel an incredible Tearing...in my forearm..or bicep...Which leads to bad swelling..and constant pain..
I Have never actually done any so called weight lifting...to build Muscle...The Day to Day Work ive always done..kept me in really muscular shape....
The problem is..My muscles just do not naturally build the way they did in my 20 s...so I am basically living off of the residual Musculature i built up working like a donkey my entire young life...(Thank GOD I did)
Any time i try to do a few reps with some weights now.....hoping to regain some Muscle...I hurt so badly in ALL of my joints and ligaments...that I stay pretty clear of those weights for some time...until it feels better..
I am Praying..of course..One day..I might accidentally find some wonder substance thaty will re build the lost vitality of my Muscles and connective tissues..
Sorry you are experiencing all of the associated problems....
LEts just Hope and Pray something comes along that helps...
Bless you...

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Hi Jen,
Thanks for asking about Ryan. So far so good with post surgery results. He has been off crutches for two days and goes back to UPMC Sports Center tomorrow for his 3 week follow up visit since operation. He has not used his leg enough yet to know what the results are. He only had issuses with not being able to move or lift his foot after walking or kicking a socer ball around in the backyard etc. What are the effects of osteopenia ? Ryan has never grown since 9th grade when he took Amesteem also. Again I never hear of Chronic exertional Compartment Syndrome either. Thanks for making this thread a place to go for others that seek answers to their many questions of Accutane and its generic brands which are somehow still available in the United States. Unbelievable..... My thouights and prayers are always with you,
Scott
Scott

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I took accutane two years ago right after graduating from high school and going into college. When I got into college I started having many different stomach problems and blamed them all on not having a regular eating schedule and having a bad diet. Two years later I am living in my own place, keeping up a good eating schedule and trying to eat healthy and I still have the same problems.
When you become happy to have a day that you go to the bathroom and everything comes out normal, there is definitely something wrong. Accutane has destroyed my digestive system and yes, I know I signed the papers after seeing the symptoms it can cause, and I was stupid and young when I signed the papers and just wanted to get rid of my acne.
What I have heard now after researching on the internet is that problems such as Ulcerative Colitis have been caused by Accutane that we were not warned about, and people have won million dollar cases for this. I myself will definitely try to get compensation for the pain I have to go through especially if I have to go through any more medical treatments.

Anybody looking to try Accutane, like everyone else has said, it is not worth it, I would take my acne back any day in exchange for what I go through now. Seeing yourself as unnatractive is a million times better than not being able to function like a normal person. I cannot go off of my eating schedule for even an hour without spending the rest of the day in pain and in the bathroom, and find myself feeling much more embarrased being constantly bloated and gassy than I ever felt with my acne.

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My daughter took accutane when she was a teen and is now 24. She has constant pain, nueropathy, stomach issues, migraine headacheus, lack of energy and, intestinal issues. The doctors did test after test and can't seem to figure out what is going on. Could all her symptoms be caused from the accutane?

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HI. I read the posts every day as i have my 5 year old son, yes i said 5 year old son on accutane for his skin disease ( ichthyosis ) he takes 10 mg every day and latley 1 pill 10 mg every two days because of side effects, fever, nausea,grumpyness if thats a word...
its the only medicine that gives him comfortable skin... I dont know what to do please don't write back if your going to tell me why don't you try this for him or change diet and ect... we as parents have tried every cream weather be herbal and what not.. every diet.. its either accutane and he looks good to the eye and he is comfortable or no meds and he looks really bad dry and constant stairs from every day people it's a hard life not looking and being like others... is it worth it is what i am really asking????????
thank you in advance for answering me
jen & Aidan

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I can't believe they would give a 5yr old this poision. My eldest son had bad skin & was given ichthapaste bandages 4 his legs. It was so bad he looked like he'd been scolded. It worked so go back & see if theres something else similar. My youngest son had acne & being mixed race, their skin scars .He was given Isotretinoin (accutane) If I had known that this was a Chemo drug theres no way i'd have let my boy take it. Your son is so young & im sure his skin will improve. Please do not risk ruining his future because of others and their hang ups. Im sure he wouldnt thank you if he ended up with painful joints or crohns in the future. You have the knowledge about the drug. I did not find these sites until it was too late. I only hope theres not too much damage caused already. We are brainwashed into thinking drugs is the way but some people are affected by them more than others. I wish your son well and a happy , healthy life .

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HEllo JEn And Aidan...
I hope this does not seem or sound too pushy or nosey...
I did a little research on your Boys Condition...
I am Sure you have heard of some of the Naturopathic Formulas available..
I Found Thynofax To be interesting...and all natural..
With proposed good results.
Sorry...if this seems to minimize what you are going through...that is certainly not my intent...
I CAN tell you...I have NOTHING but regrets of taking Accutane...
I had Cystic Acne...mostly on my face...along the cheekbone...I really only got the type of acne that got infected....
As though the effect was more in my underlying muscles...and toward the Bone..than the surface...
So...Admittedly...it was extremely painful...and obviously embarrassing...because my skin was real red around the effected area..and the bump would swell to the appearance of a small volcano ...at times i had around a dozen of the lil disasters on my face...and often on my nose and forehead..
The Doctors, i went to,after a few years of treatments, were pretty much stumped at any other way to help my acne...
So...Once on Accutane..the improvements were rather dramatic...and honestly...a relief..
The Extremely dry lips with cracking..and the tremendous bone and joint pain...was told to me...to be short term..and necessary...
Unfortunately....right after stopping the accutane treatments...each time...my acne slowly but surely returned.
So...each time they got to the point of numerous..and infected...My doctor put me back on the Accutane...
Three years running...and for at least 3 months each treatment...
Just to give you an idea of my exposure..
Which is honestly...what i consider it ...
I DO give all the credit possible to the Accutane...
For helping me to overcome my acne...at that time...
UNFORTUNATELY....... I could not...at the time..find ANY other relief...
...looking back...i can tell you....I wish i waited ....and did more searching for other means...
I did not have the benefit of the internet 25 plus years ago....
So the infortmation was limited...
The Drug companies only admitted to the very limited side effects at that time...and..the Birth defects warning..which did not apply to me..being a guy..
NOW..the minute i see a drug has a Birth Defect Warning..I do my very best to steer clear of it..
I cannot begin to tell you how destroyed my System is...
And I am what Most have always considered...Basically Bullet Proof..My entire Life..
I Realize..at least some of my Health complaints can be in part, atributed to getting older...
As People say...NOW..when i reach for my glasses..to read small print.. "It's HELL to get old...)
Even though I am only young 40s...
HONESTLY....
From the Top of My Balding Head...to the tips of my very painful toes...(The Joints pop in and out when i walk..or even TRY to jog or run)
I can PROMISE you....
The DRUG Accutane...The POISON..Rather................."KILLS"
...Sometimes Quickly...in the form of Documented Suicides...and often.....rather Slowly...
As is My case...and About most others...
PLEASe...at least take a Concentrated LOOK into More NATURAL Options....
ALso...look closely at what is NOW available for WARNINGS...from REAl...INJURED People....across the last 25 years..of POISONINGS...from this ACCUTANE...
Feel free to contact me Directly....at [email protected] [1]...
I Will pray for your Lil Guy...
Bless him

[1] Editor's note - In order to protect privacy, we do not allow individuals to post their personal contact information on our discussion threads (except in some very rare cases).

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Dear Jen and Aidan

,Im so sorry to hear of your childs condition. I copied and pasted the below remarks from the Mayo Clinic. I am not a doctor and I am sure you are doing what you feel is best for your child. I wish your family the best and don't give up on finding differnt ways to treat this diease. I see below where accutane is given in worst cases. Accutane causes ones body to dry up and cause dry skin, lips, bowels etc. I am sure you are doing what you fell is best. Possible trying a differnt specialist in a differnt town like the Mayo Clinic or Cleveland Clinic can give you options that are new and hold promises too. Maybe looking into the Gerson Therapy can give you more options. They have a 800 telephone number. I wish I could help you.
Best Wishes,
From the Heart,
Scott


Treatments and drugs
By Mayo Clinic staff
There's no known cure for ichthyosis, so the goal of treatment is to manage the condition.

Medications
Treatments may include:
Alpha hydroxy acids, such as lactic acid and glycolic acid. Treatment can include prescription creams and ointments that contain acids that help control scaling and increase skin moisture.
Retinoids. Your doctor may proscribe these vitamin A-derived medications in severe cases. They reduce the production of skin cells. Side effects from the medication may include eye and lip inflammation, bone spurs and hair loss, as well as birth defects if taken during pregnancy.

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Dear Jeepstick,

Best Wishes with your daughters health concerns. 6 years later, today, Im still taken my son to the doctors searching for answers. There are allot of post here which I have found very helpful in understanding the cause and effect of these drugs,

Best Wishes,
Scott

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Hello Scott
Thank you for your post and good luck with you child as well. I have not read most of the posts but plan on doing so in my spare moments.
thanks again
jeepdisk

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Scott,
Glad to hear your son is healing and at least has a answer to 1 of his problems. Hopefully this surgery will help. As for Osteopenia it is bone loss, It can be repaired unlike Osteoprosis, but my age and being a female and then thyroid problems are NOT on my side. I did gain some bone back in the spine, but still 1-1/2in shorter. As for your son NOT growing anymore after accutane could be from ephyiseal clousure, but no way to tell unless he would of had a xray of it before accutane and 1 after.

This chronic tendonitis is horrible people. I have had it in my right foot (extensor) achilles, side of the foot, my calf, my right arm and hand for 3yrs and now the left. I am on steroids as since Accutane I can't take any NSAIDs. Any advice on how to kick this chronic tendonitis?Nothing works. :(

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To Jennifer:

I am begging you to look into the other suggestions made on this board for your son. Your son is very young and still growing! Accutane could stunt his growth, cause bone problems, joints etc..... Find another doctor, another opinion.
I wish you the best....Maybe even a retnoid cream, which would be less harser. Good Luck

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Hi Scott, hope your son has some relief from his operation and gets the use back in his foot . Best wishes Mitch UK

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Uh, hello? That's what this forum is for. I am (or was) considering taking Accutane, and am doing research on it now. People who have had experiences with it post their results for others to read. I don't see what your problem is. Congratulations, you made the decision yourself. So did most of the people here. And doctors are required to warn their patients of the side-effects. Most people probably were warned, but didn't realize the precise extent to which their health could be damaged. Your condescension does not belong here.

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I realize the intent or meaning of a persons posts can both be taken out of Context...and or read as though the person is standing on a Soapbox of sorts...
I for one, took the Accutane over 20 plus years ago...when there was very little information given...as to the true extent of the Damage it could inflict..LONG TERM...
I have done reasonable investigations...and found that...as usual...the Drug Company Knew full well just how bad the long term effects both WOULD and Could be...
I can easily enough PROVE to ANYONE curious..of this Maddening Disease Prone POISONs..Long term effcts POSSIBLE...
I recently was both Xrayed..for Broken Ribs...and then...days later...Cat Scanned...
BOTH times the doctors came to me...and made very informed assessments of the shortening of my Vertebrae....from both the scans...
They asked...how...possibly..with NO Medical Family History..of such a DISEASE...could I be so Screwed...literally..
My spine is basically collapsing...upon itself..while I am young...
BOTH Doctors told me If they did not know better...they would have figured they were handed the Xray and Cat Scan of a 85 to 90 year old Patient..with LONG term spinal disease...(They used medical terminology...of course)
I can readily send anyone that might doubt iut...the scans and the Xrays...
If anyone would like to know what WILL eventually happen to someone FOOLISH...YES FOOOLISH enough to take this POISON...Come visit ME...
I will likely be permanently in a Wheelchair...shortly...
I have two very Small children to provide for..and I HAD a Pretty GOOD Future to look forward to...
NOW..I have so many Health Problems..IF I were to list them...You would ALL think I was MAD.or a CRAZY Complainer
ALl I can Guarantee you is..GOD HELP you..If you ever put this crap in your system!...
*********** Starfishmoonman.......

Email.....
I Run (Used to...) With the Lil Yellow Man Place over in America...and online...
Ask me and I will tell you ALL I know...
God Bless............

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EXCUSE ME!
I read Aya's post and thought about it. I reread it to see if I had indeed read it right. I did not appreciate that post. Not knowing the circumstance around why the medication was taken, who the decision was made by, how much information was out there or what information was given to them by a doctor and or pharmacist. These people are suffering from this medication and I feel they do not need anyone throwing it in there face in that manner. Do you not think that the people who made that decision have not already thought of that or blamed them selves for making that decision for their child. I myself have. My ex husband made that decision for my daughter with out me. He has passed on since but was a intelligent man. Had he known that these side effects could harm his little girl, He would have NEVER had her take it!
I know my opinions is not worth much in this world but at least I feel better about saying it!

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Just to clarify, my reply was to this post written by Miranda Moore:

"WOW! all you people who took accutane and have all these side effects in the future...guess what they tell you that before you start taking it!! I took accutane knowing about the long term side effects and yeah there were side effects that the doctor told me would happen and its not like you can't read up about the stuff on the internet if you cared about your children you should have researched the effects of accutane BEFORE you let your kid take it thats what my mom did and she left the decision up to me. You should look up every medication you take that has any kind of side effects.``

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