accutane victim

[lyter]

hello doctor,

about 1.5 year ago after doing some reading i went to doctor for accutane. i was 22, 60 kg with moderate acne. i was expecting a 120-150 mg/kg cumulitive accutane dosage. i ended up taking 40 mg/day for the first 2 months. 80 mg/day for another 2 months, and 120 mg/day for the last month (180 mg/kg the cumulitive final dosage). this was against my will but the doctor pushed me for it. he convinced me that since my liver, eyes and brain were fine i should push it. now i have been off accutane for a year. for the past 6 months i have felt like a old women. every single joint in my body makes "popping" sound and they all hurt. i am left handed and have not been able to use it for any thing but typing or simple things because my shoulder blade hurts and burns. my mouth is so dry that when i wake up my tongue is stuck to the top of my mouth. i never had any joint/mouth problem before accutane and it started mildly towards the end of accutane treatment. i am so afraid of my future that i cant do anything but sleeping. i feel like i have permamntly maimed my perfectly healthy body. i was so mad couple of weeks ago that i thought i should send the doctor a personal letter telling him about my condition because i felt that for someone with moderate acne that was cleared up after the second month the dosage perscribed was simply outragous. do you think is there any chance my body would recover from this?

[Alan Rockoff, MD]

The doses your doctor used were in the range generally recommended--1/2 to 2 milligrams per kilogram of body weight.  I am puzzled by your continued symptoms of pain and so forth, because I haven't seen them in my patients.  Even those few people with significant aches see them go away when the drug is stopped; it's out of your system in 2-4 weeks.  I really doubt that you have "permanently maimed" yourself.  You need to ask your doctor--or another doctor if you wish--to asses what's going on, and whether it's related to Accutane.

Take care.

Dr. Rockoff

[DrAtNIH]

From previous message, you pointed out that you are moderate acne, if that is case, you are not suppose to treat with Accutane. According Clinical Dermotology 4th ed. Habif, only patient suffering severe acne (Papules/pustules +++/++++, Nodules ++/+++, Scarring long history of acne treatment failed other Rx depressed with appearance) was recommended to use Accutane since its severe side effects. I will email some published articles to you when in my office.
Accutane is actually isotretinoin, it is modifier of Retinoid which is used as topical med. as I know.

Happy holiday

[escargot905]

Sounds to me you could have fibromyalgia. Do you many sore pressure points?-inside part of knees, top of forearms,chest and many more-check out info on fibromyalgia.

[beautifulface]

Have you heard of Sam-E supplement?  My good friend swears by it.  I tried it twice and didn't notice much, but its seems like a harmless vitaming-type thing to try to boost your mood and see if it lessens the joint pain (oddly enough, I remember those were two of the main things it attempts to fix).  I took Accutane as a 23-year-old and agree with you that the medicine, in whatever dose, does have lasting effects on your system.  Perhaps I shouldn't have taken the drug either because I had moderate acne, concentrated along the jawline and on the chin, but these docs are not out to hurt us.  They see the clinical results and want to spread the cure.  My brother is a family practice doctor who warned me that the drug was so systematically potent that scientists really don't know exactly what it is doing to every part of the body.  They just know it seems to work.  Perhaps like you, I notice that my whole body creaks (e.g., my back is really easy to "crack") audibly.  So far, I don't feel pain, but I do suspect that maybe all of the crackling and creaking is a sign of earlier-onset arthritus down the road.  I hope I can be as strong as you are being, and ask as many people as I can, for help if it comes to that.  I wish you luck in your research!  Try that yellow supplement called Sam-E, too (although, my doctor-brother told me it seems silly...).