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,...
Hi Everyone -
I am a 43 year old male who has had HS since 16 or so. It appears on ears, scalp/neck, axillae/chest, groin, buttocks, and waist line area.
I have already tried the following:
minocycline
doxycycline
tetracycline
rifampfin
clyndamycin
metformin (allergic)
Bactrim (sulfa) seems to be the only half way effective medicaiton, but Stevens-Johnson Syndrome is enough to make me want to stay far away from taking it anymore.
I hear that Humira is something that might work, but there are a lot of side effects/monitoring of blood/risks..etc...etc...
Is that the way to go at this point? I have eight bad places, and just depressed.
Maybe the most likely reason for a lack of improvement is that there isn't a susceptible organism present, whether that's because some of the organisms present have gained antibiotic resistance or because they left the premises (doxycycline did absolutely nothing for me, but that may not be surprising since at the time I was probably down to microbes we wouldn't expect it to work on anyway, whereas cases that respond to doxy may still have susceptible specimens present).
I think that's really the kind of research we are missing the most in HS, is research that carefully monitors the progress of a therapy and observes what is happening during the course of antibiotic treatmenty, rather than just testing at the beginning and end of treatment if even that -the kind of research that might tell us whether a particular antibiotic is actually killing anything or just making certain infections behave better, but the need for that kind of research may go far beyond just HS.
The two biggest reasons I've tried to avoid biologics personally (besides never actually having been offered them by any of x number of doctors) is because one possible side effect is the increased risk of infections, which is where I personally suspect most if not all of the HS symptoms are coming from to begin with, and the possible lack of patient recourse in the case of injury due to the medication. I'm still not sure why the FDA even approved Humira in the first place when the manufacturer continues to insist that you shouldn't start it if you have an infection, Maybe I need to do a better job asking, but I've still never gotten a straight answer to the question of whether or not we are genuine candidates for Humira.
Still, I don't doubt that some people have experienced benefits from using biologics or have used them without any harm coming of it. I guess we can only try to make the most informed decisions possible, and weigh things out for ourselves?