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,
A few days ago I was diagnosed with HS. I developed a lump in my armpit about week ago and I had no idea it would be this. I was thinking more like a boil. Anyway the research I've done has me a little depressed. It seems scary, painful and isolating. I've been placed on a course of antibiotics and I feel like they aren't doing anything at all. (It's day 2.5 of antibiotic treatment). I have so many questions........ Does the lump always burst? How long does it take? Is it better to let my hair grow free or use Nair to keep the area hair free as much as possible? Any kind words, advice, or anything really would be great.
Thanks,
A confused new suffererÂ
As a result, most of what's written is bleak, hopeless, depressing, contradictory, and etc,, and many doctors seem to adopt a similar perspective for reading that junk.
Many of them seem to have talked themselves into thinking we don't get infections, and that they're giving us antibiotics for their "anti-inflammatory" or "immunosuppressive" side effects rather than antibiotic effects, whereas research into the bacteriology of HS has been saying otherwise for as long as 30 years now. The better the quality of the microbiological study, the more consistently they find infection in HS patients.
Doctors need to understand that they may be dealing with infection (often multiple infections), that items of concern like Staph and Strep seem to be extremely common with HS, and may need to be checked for and treated carefully. They should also be aware we may have a tendency to have a different Staph than S. aureus/MRSA, which ours (S. lugdunensis) can easily be mistaken for.
Many doctors still don't even seem to have gotten the memo that such a thing exists as another species of nasty yellow Staph, which is very sad because ours is supposed to be much easier to get rid of than S. aureus/MRSA.
My feeling is that the doxycycline that's so popular for some doctors to give us may work wonders IF we happen to have a major infection that's susceptible to it, or we may be on it a year for nothing if we don't. There are a number of studies reporting improvements in HS with clindamycin, but the Staph and Strep might also respond to erythromycin. It might be the only thing I've seen my doctor do right in 20 years, but they did seem to manage to get our special HS Staph off of my person with just 2-3 weeks of a standard course of erythromycin.
We also have an HS study from the last year that makes it sound like we might expect that oral clindamycin might be a better idea than topical clindamycin.
Maybe in part because of the differences we can have in our bacteriology (as well as other differences from patient to patient), a lot of "home remedies" for HS can have very different results depending on the person, there doesn't seem to be any "one size fits all" solutions for HS.
If you can find and identify any "triggers" - things that seem to cause your symptoms to flare up (often these are things that promote inflammation), and eliminate them from your life, it can help to get from day to day, be it something in your diet that you're reacting to, stress, or maybe some personal care product you're sensitive to or some other thing.
Many patients seem to report improved HS management from the "Paleo diet" - other seem to have had success with "elimination diets" to identify dietary HS triggers, where you might try going a few weeks or a month avoiding various foods to see if there's improvement.
Nightshades (tomatoes, potatoes, eggplant) have often been identified as HS triggers in some people, glutens or yeast products might also be triggers for some of us. Some of these sensitivities may be recently acquired, it's actually kind of hard for me to to imagine being 30 and not knowing you have a Nightshade allergy. I'm reacting to things I didn't used to, I'm showing sensitization to yeast or dietary fungi now that I didn't have a few years ago.
(In my opinion, though, this might want to be more of a last resort when a doctor has made an HONEST effort to look for and eliminate infection and still not dealt with it successfully, but that may all depend on your situation).
Try to keep your spirits up, and I think there really is good reason to do so - I don't think this disease is ANYWHERE near as mysterious or hopeless as it's often made out to be by those who are supposed to be "in the know" about it.
If you don't get stuck with a know-it-all doctor who can't be bothered to read a few articles on HS even when you print out the articles for them, consider helping to educate your doctor about HS and some of the things that patients are often dealing with, if they don't show a clear understanding of them.
BTW, if I could get a doctor to read just two papers on what sort of bacteriology is typical in Hidradenitis patients before attempting to treat it, it would be these
https://www.ncbi.nlm.nih.gov/pubmed/26617355
https://www.ncbi.nlm.nih.gov/pubmed/25418454
(Older reports may claim to find Staph. aureus in HS, but these may have been written before we realized there was the similar but separate species of Staph that is increasingly associated with HS).