Negative Accutane Experiences
Posted 17 March 2009 - 08:27 PM
Please make just one post describing your experience, and edit/update that post as needed ... this will make it much easier for readers to follow each person's story.
It would be helpful, of course, to know the length of your course(s), your dosage(s), and when you started or finished. Please do not post until AFTER you have finished your course.
Please do not post links to other sites. This thread is here for personal stories of Acne.org members only. It has been pinned so that it will not be lost in the shuffle.
Neither this thread nor the "positive experience" thread should be regarded as definitive proof of anything, pro or con, about Accutane. This is by no means a scientific sampling and we are not checking up on anyone who posts here. It is simply a place where people can tell their stories and keep them up to date in a simple format that is uncluttered and easy to follow.
Something to keep in mind when reading this thread: quite a few people do get directed to Acne.org from anti-Accutane Web sites for the specific purpose of posting their negative experiences on this board. It's usually pretty obvious who these posters are (lengthy posts, one-time posters, etc.). However, this is a very open forum, and so long as these people stay within our rules and guidelines, we welcome them.
Arguments, flaming, and off-topic posts will be invis'd.
Posted 19 March 2009 - 11:10 AM
Negative experiences: IB, and also random bad breakouts along the way. Redness, flushing, scarring proneness (95% of my scars came from accutane).
Posted 20 March 2009 - 06:46 AM
Posted 23 March 2009 - 11:18 AM
Posted 23 March 2009 - 11:52 AM
Much like Max i suffer from flaking and itching and although my acne has not come back as severely as it was before, it did return slightly.
Not a very good thing for a guy in a glam rock band : (
Posted 26 March 2009 - 11:04 AM
40 mg a day from January 2006 - July/August 2006
Short bumper course of 20mg per day from July-September 2007.
I have suffered from acne since I was about 17. I'm 25 now. It never really affected me at first; in fact it didn't bother me at all up until the age of about 21 when I started to work. I became very conscious of my skin and working in a bar and restaurant was never easy because of it. I became depressed and lacked any confidence. My mates, family and people around me loved me though and I struggled to see what I was getting so down about. To them, I just had a few spots here and there. To me though, it was embarrassing and socially crippling to live with. How could I go to any interview or social event covered in acne? It just wasn't fair.
From the age of 21 I went to see a Derm and was prescribed tetracycline, the basic anti-biotic. This did nothing. I also tried various BP lotions and topical treatments to no avail. In my last year of uni, 2005, I was a emotional wreck. I was suicidal and a social recluse. My family and friends didn't know what to do about it. I also tried Minocin and that made my skin progressively worse. In the end I had all but given up hope. I tried the BP Regimen for about a month and it slowly began to work, but I wasn't confident so I went back to my derm. Finally I was given accutane. I was on a 6 month course at 40mg per day. From popping that first pill the effects were immediate. My skin thoroughly cleared up in about 2 weeks and has been perfectly clear since. My life underwent a significant change. I was more confident, I began training and building muscle and suddenyl I was full of life. Many girls became interested in me literally overnight (not because of my clear skin I doubt, but because of my persona and new confidence. In fact I was told 2 years ago that 3 girls in the office seriously had the hots for me despite my acne, so that says a lot about how we see ourselves when we struggle with the condition). Anyway, I was overjoyed. I met the girl of my dreams who I am still with today, just about because of my other illnesses, and I never had a problem going out and socialising. It was so nice to wake up every morning to clear skin and a life full of new joy. I was the most thankful person on the planet. I got a good job in July 2006 where I still am (just about) and everything was going perfectly well for me. I finished my course in August 2006. I've had some absolutely brilliant memories over the last 2 years, but it all started to go seriously wrong in September 2007.
I started to get very painful ankle joints. I had sprained both ankles badly over a year ago and they had fully healed so it was quite bizarre that I was getting these pains. I battled through the pain until December 2007 when I finally saw an Orthopaedic Surgeon who suggested physio, meds and rest. The pain was significant in both ankles. Nothing worked, no meds helped and I was struggling to walk. In April 2008 I had an ankle operation on the left foot. The results were quite disturbing. I had extensive cartilage damage in there which was very unusual for my age and build. I was an athlete who never suffered with joint problems before. In fact, I was due to join the Royal Air Force in May 2008 as a Regiment Officer - that will never happen now. Fast track 3 months to June and the pain was still there, a constant throbbing pain from morning to night. I struggle to walk still, more so than before. I just had another MRI scan completed on the left ankle and both knees. The last 10 months have been terrible for me. The joint pain is spreading like wildfire. I have severe pain now in my knees, elbows, wrists and my lower back. My finger joints continuously lock up and hurt, they crack all the time. I thought this could be due to one of the 100 types of arthritis so I've had blood tests done - they've all come back negative - everything checks out. This pain is simply unbearable. I'm finding it nearly impossible to work, sleep and eat and my health is in rapid decline. My joints grind constantly and every time there is a more excruciating pain than I'm already in. However, the tests reveal that all the joints are actually in good condition..
Nothing makes sense. Not one of the 10 odd doctors I've seen so far and put a finger on the cause and no pain medications work. My pain has lasted over 10 months and there is no sign of it relinquishing. I have tried everything from codeine to BuTrans morphine patches through to alternative therapies and pregabalin. NOTHING HAS WORKED YET TO DATE.
Now my world is slowly crashing down and once again I'm in the cycle of thinking about the dreaded 'worst'. I don't know how much longer I can take this. I'm exhausted, frightened and frustrated. Whilst accutane has given me the extra confidence I needed, I do truly believe I've paid for it with my long term health. My ambitions have been destroyed of joining the Royal Air Force as an Officer have been destroyed by this drug.
Please all, REALLY think about taking the miracle drug. It is just that, but may certainly come back years later to bite you worse than you could ever imagine. Take a look at the Accutane Survivors forum.
I suffer from the following post accutane side effects more than 18 months on:
- EXTREMELY SEVERE, ALL OVER JOINT PAIN THAT IS UNRESPONSIVE TO NEARLY ALL TREATMENTS
- MILD IBS
- MILD SEXUAL PROBLEMS
- MAJOR DEPRESSION - PRIMARILY DUE TO THE PAIN
- A RUINED AMBITION, CAREER, LIFE AND MILD ACNE
Take heed. There are thousands of others out there.
Posted 26 March 2009 - 05:14 PM
Posted 27 March 2009 - 09:25 AM
Posted 29 March 2009 - 12:07 AM
The first major side effect I developed was flushing. I don't remember ever flushing while on accutane and I never had flushed before in my life. Now I seem to flush everyday anytime i'm stressed or in any sort of heat. The flushing is miserable and I wholeheartedly regret going on accutane because of the flushing. You may think acne is bad, but when you really think about it almost 100% of it is psychological. With flushing my face actually burns when I flush and I am extremely uncomfortable not even considering how bright red my face gets and how embarrassing it is to have this happen in public. Even when I am not flushed my natural skin color does not really return to my cheeks and my cheeks are red throughout the day. The flushing really put a strain on my college experience and I would much rather have my acne back than the flushing, but this isn't even considering the other nasty side effect I have gotten.
I now deal with constant joint/muscle pain similar somewhat to Sheefa due to the accutane. The pain has slowly progressed since I got off accutane to the point where now I am really concerned. I do not recover from injuries anymore and I still feel the effects of a minor hamstring pull that occurred back in November which is just an example of how ridiculous my body is now. When I wake up in the morning my body aches all over and I feel like an 80 year old man with arthritis which is ridiculous since I am 21 and had always been a great athlete who never had a serious injury. I have had to stop running and lifting weights until I can get this figured out because the pain is unbearable. My back is thoroughly trashed and X-rays showed no damage so I have no idea what to make of the throbbing pain I constantly have in my back.
Overall, I guess the moral of the story would be that the risks of accutane far outweigh the potential benefits. The most important thing I can tell people is that accutane can cause side effects that do not appear until AFTER you stop your treatment on accutane. I was aware of accutane side effects going into my treatment, but had no idea that it could cause side effects after I had stopped taking the drug. There is seriously something wrong with a drug that can cause hidden long term side effects. Looking back my life was much better before accutane and it is almost comical that I have all these problems because I was trying to get rid of acne. When you really think about it acne is a minor thing which cannot affect your physical health. I understand that it can affect your mental state, but accutane is not necessarily the answer.
Posted 31 March 2009 - 03:01 PM
This is the day when I started accutane, it doesn't look as bad as it really was cause the pictures are not at their best quality.
So... I had really bad reaction to accutane... I first thought it was normal and this was just an IB...
But it kept getting worse... big pump and whiteheads... really bad...
I had no acne on cheeks when I started and... this is how I looked like after 2 months into accutane:
I'M not saying that accutane will do this to everyone. Just be aware and see your derm if you have questions about your skins and don't wait to much... IB should not be THAT bad...
I shouldn't have taken accutane for a 3rd times... even if it has done the job the 2 times before... it really made my cheeks bad.
I stopped accutane and started cortisone. 20 days into cortisone: I have no more bump and kyst, 2-3 little pimple nothing bad... just red marks and I hope they will fade away...
Good luck with accutane it's a good solution but try to see your derm often while on it !
Edited by Wynne, 07 April 2009 - 10:13 AM.
added in referred post.
Posted 04 April 2009 - 03:48 PM
I did have some side effects while on accutane, it did indeed effect my mood and gave me some other problems whilst on it. But most of my side effects appear aprox 6 months post tane.
I have hairloss across my entire body. I have extremely dry eyes because of the inflammation in my eyelids. I picked up alot of scarring from accutane where i had never scarred before, i actually had a condition known as AMVC which is spontaneous scarring where there has been no injury previously. This is again due to nasty inflammation initiated by accutane. I get nasty mouth ulcers all the time, my joints can sometimes hurt a great deal, i get bad muscle pains. I have dryness across my entire body. I also haveextreme flushing and swelling of my nose and cheeks (this looks worse than any acne believe me).
Now i actually have alot of these side effects from accutane under control these days, but my condition is chronic. If i stop the treatment all of these things re appear.I am on a drug often used for lupus in order to combate the extremely inflammed state i was left in.
I have simply posted here because i want to share my side of the story.
Posted 05 April 2009 - 02:23 PM
I am not sure what else can't remember it gets ridiculous when making a side effect list. I am sure I have numerous other problems to internal organs that has yet to be diagnosed.
I don't recommend taking toxic levels of vitamin a derivative also used for chemotherapy for acne. It causes irreversible damage and my entire mind and body feels so different I hate it.
Posted 06 April 2009 - 04:49 AM
Posted 07 April 2009 - 08:13 AM
I was on accutane for 7 1/2 months. Oct of 07-Jun 08. I was reffered by internist to the derm for accutane for 3 cysts the color of my skin. I was never offered anything elese and when I asked if there was anything elese. I was told Accutane was the miracle drug that would take my cysts away nothing elese would work as well. I asked numerous questions regarding the booklet to be only told by my derm that everything was blamed on accutane and I would only get dry lips and some dry face.
I believed and trusted my doctor, partly due to my husband is a physican. (surgeon not derm) I never thought that my doctor would not be truthful.
I can't even begin to describe what this drug has done to me. I did only have dry lips for the first 7 months, however in the last two weeks of the medication I developed a funny feeling in my foot and a string that no doctor to this day can describe.
4 months after accutane I now have theese problems. There are many more,but theese are just a few.
Severe Osteopenia high fracture risk/Loss of height 1/12 inches. I was 5'6 1/2 before accutane and after 5'5. (verfied by med records that I did shrink while on the med.)
Swelling behind the knee/Mri showed trauma to patella/red marrow/small joint effuison/tendosis of the quadricep (which is diff from tendonitis)/ I had no trauma to my knee/ Dr's are baffled.
Severe Joint,bone,muscle and nerve pain. The string is still in my foot and one is now in my hand, I have severe tendon swelling throughout my body, which is believed by some doctors to have traped some of my nerves/ or caused soft tissue calcifications. Thier still baffled.
I was found two months after to have a thyroid problem/ half of my rt thyroid is gone and the lft has two cysts./Thyroid meds are not helping./no family hx of thyriod disorders.
Dry eyes/inflamed eyelids/hair thinning/dry mouth/dry body/skin fragility/redness across the cheeks and nose/wrinkly hands/ itchy skin/ nasty mouth ulcers at times.
I was found to have 3% iron in my body, but not anemic coming off accutane also.
The worst thing is my three cysts never went away and now I have worse acne that I never had.
Theese are just a few....... The medication I need to treat my nerve/joint and muscle problems and some of the inflamation I can not have. Why b/c of the osteopenia. The med I need can cause my osteopenia to worsen and become osteoprosis.
I went back to my derm and asked him about some of theese and His response was: " oh, usually theese things don't happen to people unless they have been on it for 18 months or so."
I wish my derm would of been honest and I wish I would of known that this was a chemotherapy drug that treats brain/pancreas and other cancers. I would have never taken this medication.
I can not recommend accutane, It has destroyed me and my family. I would advise really hard to think is a temporary fix for acne worth permanent damage to your health.
Posted 08 April 2009 - 11:56 AM
Posted 11 April 2009 - 07:17 AM
Accutane has ruined my life
I was on 40 mg (just to show you that you dont have to be on a high dose) and it gave me severe joint paints,extreme flushing and redness,scars,and due to my extreme flushing my heart is out of wack,my eyes are always dry,my ears are always bright bright red
my dermatologist does not understand it so right now I am doing a bunch of tests and hes trying to send me to the best dermatologists in canada because of how fucked this drug literally fucked me..
extreme flushing (whole body burning)..which leads to my heart
rashes on my hands,purple sometimes
seb derm on my face
scars (I never scared before accutane)
People everyday I wake up I regret going on accutane
all of these side effects are way worse then acne
It was ruined my life,im on anti-depressants right now also which dont even do anything so that should give you a outlook
Sometimes I think of killing myself..never thought of that before accutane
Posted 16 April 2009 - 10:11 AM
On my last course I began to experience a lot of the negative side effects including:
flushing redness on my chest/face caused by anxiety or heat
joint pains, back pains
sensitivity to light
I took the drug hoping I would be cured of acne. Not only am I still suffering from acne, I now have to live with the side effects listed above.
It wasn't worth it.
Posted 18 April 2009 - 01:15 PM
Here are the side effects that are still with me 2 years later
-dry scaly skin all over my body
-joint pain in my knees, hands, and fingers
-dry, itchy scalp
-sometimes i have tinnitus - ringing in the ears
-decreased night vision - it takes so long for me to adjust to a dark room
-light sensitivity - i cannot be outside on a partially sunny day without sun glasses - it literally hurts my eyes.
oh and ......i still have acne.......
my life hasnt been too affected by these side effects becasue they are minor for the most part, and are not always present. However, if I could go back in time....I wouldnt have taken accutane because my acne is still here but at what cost?
Posted 18 April 2009 - 05:02 PM
EDIT was on 40mg so it wasn't even that high
Posted 24 April 2009 - 03:32 AM
Benefits - my skin cleared with each round of Accutane.
Disadvantages - I have some issues that i think are related to the Accutane use, issues that didn't and probably won't surface during your course of treatment, causing you to think you're free of adverse side effects.
#1, during my second round of Accutane, I started having rectal bleeding. This is listed as one of the side effects. Kind of scary, especially to an active, healthy, 19 year old freshman in college with no medical history. I had to have a colonoscopy, at 19. I know the Accutane caused the rectal bleeding, beyond a shadow of a doubt. I stopped the Accutane, and the rectal bleeding stopped, and I have not had it since. Regarding abdominal/gastrointestinal issues, Roche says the following of Accutane: "Certain symptoms may mean that your internal organs are being damaged. These organs include the liver, pancreas, bowel (intestines), and esophagus (connection between mouth and stomach). If your organs are damaged, they may not get better even after you stop taking Accutane." Rectal bleeding is then listed under this statement.
#2, I have knee pain. I can no longer run without significant knee pain. I have no reason to have knee issues - At 5'6" and 110 lbs I am nowhere near being overweight and never have been. I was never an Olympic runner or even so active such that my knees were frequently being stressed. There is no family history of knee/cartilage issues. One of Accutane's side effects is joint pain. I never had the knee problems prior to Accutane use. Taken from Roche's website: "Accutane may affect bones, muscles, and ligaments, and cause pain in your joints and muscles."
#3, my eyes are more sensitive to light. They weren't prior to Accutane use. Visual problems are listed as side effects on Roche's website.
My verdict - I wish I never took it. It simply is not worth it. I understand the low self-esteem and disfigurement of acne. I had it for 17 years, still do, but not as bad because I've been using the Regimen for a year and radically changed my diet. Accutane causes and has the potential to cause too many damaging side effects. When I was 17 and in high school, it was a time of wanting to fit in, be normal, and be beautiful. I had had acne for a very long time and desperately wanted to be clear of it. So I didn't think much about the listed side effects. This desire is what causes people to compromise and jeopardize their health. Now that I'm several years out of taking it, I see the side effects and understand that some of them didn't happen right away, and as a nurse, reading back through the side effects and how Accutane works on the body scares me even more. Change requires effort, not a magic pill. It's human nature to resist change and to take the path of least resistance. Accutane was that magic, effortless answer for me, but not the right one.
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