Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
So i've been on remecade as well as antibiotics (and a few surgeries) for a few years and have only gotten worse. Recently my doctor told me he would like to try me on 6mp, which as you may know is chemo therapy, and he also wants me to be on humera at the same time. My question is for anybody who has used 6mp. What did you experience while on it? Did you feel better? Lose weight? lose hair? feel sick? Please give me whatever you can about your experience, I would really appreciate it. I'm stuck in between wanting to try whatever and understanding that this is MY health, and me having control over what I allow is kind of important to me. I know a lot of the times doctors are just guessing and sometimes you really have to go with YOUR gut instinct (wise words from my mom, who is also a doctor). Please let me know!
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My first Google search on this for 6-mp found a non-HS related article that made it sound as if 6-mp is typically applied to kill off cells that aren't behaving (with collateral damage of some healthy cells also being killed).
My second Google search was for 6-mp + HS and I think it found a passage in Van der Zee's book on HS where he suggested a 6-mp derivative as something that might merit future trials.
I don't know if everything that's said about Azathioprine therein applies to 6-mp, but it sounded as if might be more in the context of using the medication as an immunosuppressive to lessen the effects of HS as seen as an autoimmune disease?
"Azathioprine is an immune-modulating drug that was originally developed for the control of graft rejection in transplant surgery, but nowadays it is also in use for treatment of a wide range of auto-immune and immune-mediated diseases such as Crohns disease (CD) and rheumatoid arthritis (RA). Azathioprine is an imidazole derivative of 6-mercaptopurine (6-MP) that interferes with DNA and RNA synthesis, resulting in a significant inhibition of lymphocyte proliferation and a decreased immune response. Since azathioprine is a highly effective drug for Crohns disease, it constitutes a potential therapeutic for HS which has yet to be tested in clinical trials." (pg 168)
http://www.researchgate.net/profile/Hessel_Van_Der_Zee/publication/45649249_Deroofing_a_tissue-saving_surgical_technique_for_the_treatment_of_mild_to_moderate_hidradenitis_suppurativa_lesions/links/02e7e530ca5271cbf4000000.pdf
I'm still not entirely sure what to think of the idea of chemo for HS (or of HS as autoimmune disease) myself, and can't quite take it on authority as a good idea yet - my impression of both persons to write a book on HS is that both have been very creative and generous so they've had many interesting suggestions to offer, not all of which can get to be the best ones unfortunately.