i work in the medical field and came across some information about Roche pharmaceuticals requirements to update the warning leaflet in the Accutane package (revised January 2010). In the revised warning list, it now reads “Accutane may cause blood sugar problems and diabetes.” it is not in my nature to try and find a “reason” for me having type 1; however, i took Accutane twice, once in 1996-97 and again (stronger dose) in 2001-02. i was diagnosed with type 1 in 2008, at age 38. i know one must be careful when reading info on the internet, but i have been reading claims from many other people who took Accutane and have been diagnosed with T1; some took the drug years before their official diagnosis. my aim is not to start a fight against Roche (although they are involved in numerous class action lawsuits for Accutane causing other autoimmune disorders). i am really just wondering if there are any other T1 tudiabetes members who have taken Accutane, and who have had a later onset diagnosis (over the age of 30) of Type 1, LADA or 1.5.
I have a good friend who became T1 following Accutane use. She had blood sugar issues before, and I always thought it was totally irresponsible for her doctor to have prescribed the drug. Her onset was actually at the time of accutane use as opposed to later in life. She (as well as her family) were never really bothered by the association. Personally, I would have had some trouble moving beyond it. I think we all would like to know “the story” of what happened to our bodies that left us with diabetes. Not to fix it, cause we really can’t. But just to understand.
Perhaps you should start a group, “Touched by Accutane”
I took Accutane, but after I had Type 1 diabetes. I thought the drugs which are associated with diabetes, such as some psychiatric medications, caused metabolic changes resulting in Type 2 diabetes, not Type 1. It is not clear by this statement whether Type 1 is actually be referred to or not.
I can say that Accutane changed my life, for the better. I took it after suffering from acne for 15 years, and really wish I had taken it earlier .
I think you are right to be wary of the anecdotal stuff you read on the internet. Really a good way to get frothed up. I was convinced that I got Type 1 from a flu sot after reading stuff online…then I realized I had gotten the flu shot after. 
Not that anecdotal evidence can’t be true, but it at times isn’t accurate. For a while there was a presumed connection with accutane and suicide, brought to light after a senator’s son committed suicide after using accutane. Not sure if anything was ever found of that.
I will say that I will be following this and hope there is more research before my kids are older, because if they are like me, acne will become the bane of their existence in the future, but I would not want them to take it if it were associated with autoimmune issues!
thank you for your reply on this issue. i agree that accutane is a wonder drug for acne, as it pretty much solved mine. but there is now a relatively solid link to the drug and the autoimmune disease Crohn’s, as well as other bowel disorders such as IBS, ulcerative colitis, etc. Many people claim that their GI issues started years after stopping accutane treatment. To me, Roche’s current warning label is pretty much “take at your own risk.” They pulled the drug in 2009, and put it backon the market in January 2010 under one of the longest warning labels I have ever seen. the company is tied up in numerous class actions lawsuits against people who now have chronic GI illnesses. hopefully, future acne treatments will be safer.
I was on Accutane for about 1 year when I was 16 or 17 years old. That stuff cleared my acne up very well, and I never had it bad again. I was diagnosed with diabetes when I was almost 25. Was this attributed to my Accutane use? That’s a good question, but one that’s going to be difficult to nail down I suspect.
thanks for the reply! i think that the pharmaceutical companies are the responsible parties. i don’t think that the physicians knew of these issues with the drug back when they prescribed it. physicians take an oath to do the best for those they treat; i agree that there are some irresponsible docs out there, but most are trying to do what is best. the Pharm companies big motivation is the dollar. sadly, i think there are probably many other drugs currently on the market where the risks outweigh the benefits.
Yes, I agree, it is very hard to trust the pharmaceutical companies and also some of the lawyers who behind lawsuits too…it really leaves a person feeling at a loss about what to do!
Took Accutane in the mid 90’s during high school for acne. Diagnosed with Type 1 diabetes in 1998-99 i was 20 there is no history in any of my family traced back for generations of Type 1 Diabetes.
I took Accutane for about six months I think back when I was 30 (I am 40 now). I have just lately been seeing those commercial for lawyers that Accutane causes Crohns, Irritatable Bowel and some other problems (didn’t say Type 1 though). As far as I know I don’t have any of those problems and I am a Type 2. But after I took the Accutane, I still worry about what kind of damage it could have caused for long term.
I was just diagnosed as a Type 2 this year (although I am thin and always have been). It is genetic and runs in my family though. So I am pretty sure I am not a LADA (even though everyone thinks you are if you are thin).
The only good thing about Accuntane is it actually did get rid of my acne which I battled with since high school. I left my hair permanently drier though and I think my eyes too.
Since Accutane is high doses of synthetic Vitamin A, is there are evidence or studies that shows that Vitamin A can cause autoimmune disorders? I am wondering this too about other autoimmune disorders now.
Hey, this is off the topic of diabetes but I was wondering if any of you who took Accutane besides me had any other permanent side effects like drier hair? Hearing loss? Dry nasal passages? Apparently it can effect the liver which we know plays a part in D. I think my latest blood test showed my liver was fine but just wondering what anyone else has experience.
hi - my liver function blood tests are always fine; however, an MRI diagnosed “fatty infiltration of the liver” as well as a liver hemangioma. i had the MRI to see my gallbladder (which eventually came out) and that is when they noticed the issues with my liver. my hair is much drier and i have battled mild IBS symptoms that have never been given a specific diagnosis. it may just be a coincidence; but my health really took a turn after taking the second round of accutane. the intricacies of the human body can be thrown off balance by a drug, this has been proven time and time again. accutane may very well not be the culprit, but if it is, i want the drug permanenlty off the market.
Thanks Melissa.
I was just looking up some stuff tonight about Accutane. On other site, a mother was complaining how accutane effected her son and she mentioned he became diabetic after taking it and a host of other problems. There are so many complaints out there. One of the possible side effects can be hearing loss - several years after I took it I lost half of my hearing with no explaination except that I had a few bad ear infections caused by ear wax (after the Accutane). I never had problems with my hearing or ears before this. I also have tinnutis in my left ear - this is also a symptom/side effect of Vitamin A Toxicity which is what Accutane inducing in the body.
Yes, my hair grows out dry - even the new growth is on the dry, brittle course side and I have fine hair naturally. I am pretty sure this is from Accutane from shrinking of the sebaceous glands (which is supposed to be temporary). I have some colon problems in the past (precancerous polyps) but I don’t know if they are related to the Accutane - they did happen after.
How long did you take it? I only had 1 round of six months as far as I remember. I wish I had never taken it - I wonder if I wouldn’t have some of these problems now.
i took it for two six month periods, once in 1996-97 and again around 2001-02 or thereabouts. As a side note, I am an audiologist so I know much about hearing loss and ototoxic drugs. Many, many drugs (Rx and OTC and herbs) have the potential to cause hearing loss. I would not at all be surprised if Accutane will also be found to be ototoxic. I know how you feel, but the fact is, we took it, and have to try and make peace with the decision we both made to take it. We still do not know for sure whether or not taking the drug was the etiology to our diabetes onset. all i know if that isotretinoine is a really, really strong drug that is capable of causing many chronic conditions and lasting side effects. i remember thinking, “if this drug is so harmful to an unborn baby, why is it safe for any humans?” as you know, it is a Category X “black box” drug for pregnant women. There are very, very few drugs in this category.
I saw a few posts somewhere where people became diabetic very shortly after taking accutane, but my problems seemed to appear one by one about 2 years after the first dose. At that point, I made no connection, so went ahead with a second dose. More issues after that. Ugh.
Too bad we can’t sue. I could use some money to pay for my hearing aids and those costs. Yes, true nothing we can do now. But I wish I had known than but I guess no one really did - I hope that other people will decided not to take it based on others experiences. You never know about the potential long term effects of a drug.
Yes, it was about two years or so for some of mine too - the hearing loss I mean. I never even though about the diabetes back than. Mine runs in my family so I don’t think Accutane had any effect on that - over 10 years later I found out I had it.
I think that was when I took my dose too 1996 or 1997.
I remember I had to take an iron pill in order to take it because I was borderline anemic being a vegetarian. And I had to make sure I was on the pill and used condoms. Yes, it is quite scarey. I wish I had known back than that I couldn’t have tried a natural Vitamin A instead of taking this horribly strong synthetic one.
Hi everyone,i my daughter also took accutane when she was younger and now at age 26 she was diagnosed with type 1. NO ONE in the family has diabetes. Did anyone ever think a of starting a class action suit. I know that people that came down with IBD did just that. If anyone is interested I did speak to a lawyer. You can contact me on my email ssolz311@gmail.com. I did read that accutane will have to relabel there info and state that it can raise your blood sugar
I too was on Accutane for some time in my early teens. I was also diagnosed with Type 1 at 18. I am now 34. Interesting topic!!
I am going to talk to my lawyer some time at the end of the week and keep you and others interested in what he says.
I’ve never taken Accutane. And I have absolutely no family history of the disease. But I got T1.
In addition to being careful reading info on the internet, you have to be careful not to take a few anecdotal reports saying “yes I did A and got B” and concluding that A causes B. These anecdotal reports don’t prove anything. Also remember that T1 is often diagnosed about the same age that acne is most severe, so these few anecdotal reports will almost certainly get reported here.
I took Accutane between '96-'97 and was diagnosed my senior year of HS in '98 with T1. There are class action lawsuits out there now, but if it has been more than 7 years the statute of limitations is working against you (so Ive been told). No one in my family has had Diabetes other than my Gfather, who just had to watch his diet. If anyone has any info I’d love to hear it! I just recently heard of the relationship and found this thread through an internet search. Take care
Jarret
I have looked for the class action suits for this and can’t find any. I have seen the class action for IBD. I don’t think the statue would matter but will ask my lawyer. If you know where to find this suit please let me know. Thanks.