accutane

I took accutane when I was 18 and again when I was 19. The second time around I developed such severe joint pain that I could not get out of bed.   Over ten years later I still am in the same pain. I have been to several doctors...no one can tell me what the cause is or how to stop it. I have been on so many meds over the years trying to help the pain that I couldn't even name them all. All I know is that it all started with accutane use. Any ideas of what could be the source and what direction to go?


This discussion is related to Accutane- side effect - joint ache.

[missnanny]

I think the harmful component of Accutane is the butylated inert ingredient and that it causes autoimmune issues.  One such organic solvent/poison of this type that I was looking into a few years back was -butoxyethanol.  It is also a teratogen chemical, so it can affect fertility of both men and women.  Actually, even though males do not carry a child ... they have 50% effect upon what that child has as to birth defects ...  Anyway, I would never allow my daughter to take this 15 years ago when she just wanted a clearer skin (you know teens) ... but I didn't know then what I know now.  I have noticed that gamma globulin is given when there is too much exposure to this chemical such as in carpet cleaners (Kawasaki syndrome) and it helps back off the symptoms of that.  seems to help with autoimmune action against the platelets, so maybe red blood cells and joint pain, too?  Do you have FATIGUE?

[Sheefa]

I have exactly the same thing 18 months on from taking accutane. It is  HORRID drug. 26 years old in severe joint pain every day, no sign of arthritis and no drugs seem to work. My life is hell. Any ideas?

[missnanny]

I suspect you re dealing with autoimmune issues that 2-butoxyethanol would cause.  I do think there is help with gamma globulin such as is given to kids who come down with Kawasaki Syndrome after carpet cleaning (probably don't know what chemical in carpet cleaning as there are inadequate disclosure laws today).

I was just looking into whether or not Crohn's Disease was autoimmune for a friend whose son has had violent attacks and they are moving to be closer to medical help (Except there is said to be no cure).  Yes it is autoimmune.  And yes, they even say that there are lawsuits going on regarding use of Accutane and CD starting up.  The warnings for Accutane are very similar to that of 2-butoxyethanol.  They also comment on malabsorption, lipid & cholesterol issues, fever, and that autoimmune action on the red blood cells as autoimmune hemolytic anemia is very often present AND that it was more common in the 20s and 30s for those who cleaned a lot (the upper classes).  AIHA or IMHA is the anemia that is hard to find ... unless very severe ... and it is the anemia that 2-butoxyethanol causes.

It would help to tell your doctors what could be the component of harm  ... and to consider glycobiology for help ... Rituxan if other autoimmune issues show up ... for anemia whole blood cell blood transfusion.

I hope you can find a doctor who is interested in CFIDS, CFS, FM as I think you are dealing with a subset of those