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,...
My boyfriend has had hs for 12 yrs. Armpit removed 6 mo ago. Disease is severe from the waist down so he has had alot of surgeries and that is not going so well. Large graft on lower back never healed due to drainage from below. Butt and groin horrible. Anyway dr started him on avelox, flagyl and rifampin. Insurance wont cover the avelox, then I see that this drug is maybe causing aortic tears? Its list of side effects is crazy. i try to check out the drugs He suffers enuf.. Maybe cipro? Anyone have any succeas with this drug combo? Seems like the latest thing
As much as I sing the praises of the results with this very sort of regimen (such as in the Pasteur Institute affiliated studies), I still very much wonder if this isn't more of a demonstrative regimen - it dramatically shows us what is possible with just antibiotics, and makes very strong suggestions about the nature of the disease and the role of infection, if it can be put into remission using antibiotics alone like that - but it may not make for the most ideal or most practical treatment? (Another antibiotic they've used with good success in some of these studies is ertapenem, but the cost may be restrictive even if it's available to a particular patient, and as far as I know it's still IV only so it may typically involve getting a daily shot for weeks also).
Also, I'm not even really sure why flagyl (metronidazole) is even included - I keep seeing where it's pulled six weeks into treatment for risk of organ damage with any longer courses, but I think we hardly hear of HS being resolved any faster than that).
I know that flagyl is used here often with the intent to target anerobic bacteria involved in infecting HS, but the kind of advice I run into with those anymore is that if there's reason to suspect a stubborn bug (such an infection of long standing) that it may not be a very good idea anymore to take it for granted that it will still respond to first line agents like metronidazole (flagyl), even if resistance remains relatively rare in some key anaerobic species in HS infections.
I think the rifampin-clindamycin combination might also be getting attention and it generally sounds a little less harsh, although I wish I knew why this combination might not necessarily be giving more dramatic results than anything else.
I dunno, I shouldn't be giving advice on this stuff since I'm still not half qualified, and there's some murky stuff in places about flagyl resistance and flagyl's mechanism of activity to begin with, but the best advice might be for doctors to not make any assumptions about what they're dealing with beyond Staph, Strep and something from the order of Bacteroidales (like Bacteroides or Prevotella) being some of the most frequent finds and possibly taking that as a place to start.
I'm doing more thinking than ever lately whether it wouldn't be a great goal to just try to get the Staph out of people's HS and see if that produces lasting any progress. That may be what my doctor did with mine that made a lasting world of improvement in the severity (I've got about ten years now without raging sinus tracts), and they apparently did it with something simple and old-fashioned like doxycycline or erythromycin or clavamox, in accordance with research suggesting that the typical Staph in HS may not be particularly hard to kill provided they don't just assume that it is.
Fingers crossed there may still be options like that left to some of us, especially if weren't not able to get the recommended microbial susceptibility testing.
Also, every time I want to disregard doxycycline as not being particularly useful, I soon stumble across another reason that it might actually be helpful in HS management, apart from its antibiotic properties.
Here is the latest one that I just added to my reading list
"It is interesting that TGF-ß has also been identified as the key factor in the development of hypertrophic scars and keloids in humans, because both hypergranulation tissue and hypertrophic scars and keloids are associated with a prolonged inflammatory response that ends with an overproduction of connective tissue. Since Doxycycline inhibits the production of TGF-ß it may therefore decrease or inhibit the development of hypergranulation tissue in chronic wounds, and may decrease or improve hypertrophic scarring and keloid formation. " http://www.woundsresearch.com/files/wounds/WOUNDS_December2012_Wilcox.pdf