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,...
I think what's given me the most relief and the longest lasting is probably that my doctor seems to have managed to kill off the specialized Staph species Staphylococcus lugdunensis) that may be the biggest thing most of us all have in common, whereas a lot of other doctors may panic and assume it's MRSA (which it's probably too easily mistaken for) or automatically assume that older antibiotics don't still have value.
Thus my doctor probably managed to accomplish with a short course of one antibiotic like probably erythromycin, what the best and brightest HS researchers still don't seem to be able to do with longer courses of 3 newer antibiotics at a time. It may have even been accidentally - if they'd known it was HS at the time, they might have tried other recommendations that wouldn't have worked as well - but that may well be the biggest Godsend I've had with my HS.
Sadly, while doctors may have some very smart and well-developed protocols for infections in urgent care settings, their protocols and knowledge level for other situations may still be sadly lacking. My doctor is becoming aware of biofilm infections for example (these may feature in HS) and recommended Hibiclens to help prevent them, but still doesn't seem to know how to diagnose or treat one, and neither did the specialist that they referred me to.
I am really stating to think we need both pharmaceutical companies and health organizations like the Mayo Clinic where my doctors often seem to look for guidance, to come up with better guidance on both HS treatment and especially antibiotic use in general. Possibly insurance companies also need to participate in seeing that we can get the microbiological testing we may need for doctors to make the right antibiotic choices.
Other than that, inflammation is another of the things most of us seem to have in common, hence many of us might expect benefits from anti-inflammatories like Humira, although there may be a number of drawbacks with Humira including that it may not be something we can expect to be given in perpetuity and it may be much better to kill of the infections that may causing much of the inflammation.
Literature does at least hint that there may be a number of natural anti-inflammatories that have similar if sometimes weaker activity to Humira - both turmeric and the zinc supplements that some people have used may have these properties, but there are likely more things out there in this "anti-TNF-a" category that might give us better choices if a particular one doesn't turn out to be suitable for our long-term use.
The zinc regimen for HS originally used by researchers Dreno (et al) involves a high dose just within the margin of safety, but I've seen warnings that zinc toxicity can be cumulative, so I don't know if it's a good idea to be taking 90% of the daily dose considered safe like that for extended periods of time.
As an aside, I'm increasingly suspicious that some people's triggers may have been acquired along with infection, either cross-reactivity between antibodies against microbes and the host or various foods, or possibly because infections may be able to poison the process that selects the right thing to make antibodies against (picture a pocket calculator that's low on batteries that can't do math right any more although it still tries, God bless it), or both. Some of us seem a little old to just now be discovering that french fries or other triggers can cause us rampant inflammation - that tends to sound like allergies we may not have been born with.