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’m 22 and have been dealing with hs since I was 17. After years of wondering what it was, I did enough research to figure out it was hs and eventually had a doctor confirm it.
While I do have a mild case, I am still looking for long term solutions. I have tried cutting out dairy and sugar (which I’ve found great success in. I just have to be diligent to keep doing it) and I have become good at knowing how to treat it once I have a bump.
I am currently on oral antibiotics but don’t want to stay on them long term due to how it can effect my immune system.
Since hs is caused from blocked hair follicles I wondered if anyone had success with laser hair treatments or programs like Acutane for extreme acne. If you have tried either of these I would love to hear about your experience as well as if you think it helped.
Have had positive results with weight loss and stress management. In general limiting sugar, white grains red meats, alcohol and just too much food in general. But never withdrawing from all these foodgroups fully, I havent found that eating any have pushed a flareup.
Have started using Benzoyl peroxide as a preventative measure and to help close up a couple stubborn ones and it has worked wonders. And putting in place a skin regime that work for me :)
Things like anti-bacterial soap and exfoloiator mits every other day, moisterizing properly and only shaving lower legs (unfortunately).
I have been doing laser tratment (Alexandrite) for more then a year, 8 times so far and I had groin surgery on both sides recently.
I have read some studies about Zinc gluconate where people took 90Mg/day which put the disease into complete od partial remission for most of the patients.
I have been taking 30Mg / day for 2 months now, I have not had any flare ups since :)
I hope it helps!
I think a lot of doctors and caregivers still need to understand that all these antibiotics that some of them give may often give us "off-label" for HS as "anti-inflammatories" or "immunosuppressives" may really be hitting microbe targets if improvements are observed, but that they may be having suppressive microbistatics effects on microbes rather than microbicidal effects, or getting similar results by not getting all of an infection out with them - either one might give us what is classic with the diagnosis, where all sorts of antibiotics may make improvements, but only as long as we stay on them (and of course we can't stay on them forever).
Matter of fact, I think there are a few things doctors need to understand about antibiotics regardless of what they're using them on. That probably sounds terribly arrogant of me, but I do try to do my homework. EVERY patient with HS and their doctor or caregiver should be aware of the research that affiliates of the Pasteur Institute in Paris have done on HS in the past five years or so, which both dramatically illustrates the role of infection in contributing to HS symptoms, and the unexpected challenges that can happen when trying to treat these infections once their presence is acknowledged.
Progress in this area seems very slow though, the most recent published work they participated in I think was last year, which concerned a debate over whether or not infection might actually be causing HS. I don't know when that debate is going to be settled, so in the meantime their advice that whatever it is that microbes have to do with this disease, with careful inspection we're consistently finding infection where it clearly doesn't belong, and that should be addressed - not in the capacity of using antibiotics to temporarily treat inflammation or to treat what is interpreted as overactive immunity, but to actually try to get rid of infection that may be present. The prevalence of both Staphylococcus and Streptococcus infections in association with HS is alarming, and not necessarily a recent finding.
The Pasteur Institute affiliates are still suggesting "targeted" antibiotic therapy and the proceedings from the debate make it more clear that previously what this might actually mean, It's very much worth looking at although I think I would personally suggest "directed" antibiotic therapy where the therapy is guided or directed by what we know now about typical bacteriological findings in cases, rather than being able to "target" confirmed infections. Both the lab facilities and the insurance coverage might often be deficient for obtaining solid bacteriological findings, which probably leaves us to do a bit of guess work based on the research we have.
Here's the PubMed entry for the write-up about the debate
https://www.ncbi.nlm.nih.gov/pubmed/30414909
and there is a free full text on ResearchGate https://www.researchgate.net/publication/328816428_Are_bacteria_infectious_pathogens_in_hidradenitis_suppurativa_HS_Debate_at_the_Symposium_for_Hidradenitis_Suppurativa_Advances_meeting_November_2017
I should note that these same authors seem to have been very good about seeing there is a free full text of their papers somewhere so that they are readily available to patients and their allies, I'm very grateful for that.
For guidance here, all I know is to look to things that have seemed the most promising in both HS research literature and in my own experience, which has been the lincosamide and macrolide types of antibiotics. There are quite a few research papers that make clindamycin sound notably effective in some cases, and I am still convinced my doctor managed to make some LASTING improvements in my case with erythromycin.
Beyond that I feel it's very important to recognize that infection associated with advanced HS typically isn't a single infection. Without that understanding, it's easy to mistake clinical successes with antibiotics for clinical failures. Both my doctor and I did until I learned more about HS and what sort of bacteriological findings are typical. If you think you've only got one infection instead of three, it can quickly get past you that you achieved something fantastic by killing two of them. It will try to look like you didn't kill any, like you still have that "one" infection. These are indeed things people need to be as careful with as possible.
Infections with more than one organism ("polymicrobial infections") can present a challenge to diagnosis as well as to treatment, and they can be a challenge to credit with causing symptoms of a particular diagnosis. "Koch's Postulates" which include the proposition of "one disease, one microorganism" have been difficult for some researchers or physicians to shake. If those are the rules, it will never be proven that infections are a cause of Hidradenitis even if they are in fact the cause of it (they are probably easily enough to account for all of the symptoms of it). Koch's criteria came up in last year's debate about whether HS is or isn't caused by infection, whereas someone like Dr. Randall Wolcott will happily tell you (and does so in his YouTube lectures) how "Koch's Postulates set us back one hundred years" in our understanding of the role of infections in numerous diseases.
Even places like the Mayo Clinic can be a bad place to go for advice on HS because poor understanding of the disease can be so prevalent, although they are an excellent place to go for descriptions of the type of Staph that we typically have, which is Staphyloccus lugdunensis. HS doesn't seem to be that much to do with Staph. aureus or MRSA and we may already know several reasons for that, although confusing these two Staph species may still be a common mistake that undermines the quality or outcome of our antibiotic treatment. Dr. Patel from the Mayo Clinic participated in some outstanding work about how to treat Staph. lugdunensis with antibiotics, and that work seems surprisingly optimistic about the potential for getting rid of it.
I really wish the Mayo Clinic would take the time to improve their page on HS though - virtually every doctor I go to takes one look at my rear and declares, "Yup, you've definitely got an infection alright" but they seem to be very fond of going to the Mayo Clinic as a trusted source for guidance, which unfortunately generally seems to discourage them from thinking that it is infection. (It's a long story but there definitely seems to be some mangling of information starting with academic textbooks on HS).
One of the things that came to light at the Pasteur Institute even after such dramatic findings of microbes in HS patients, is that treating the infections as a whole can still pose a challenge, even when you know what you're up against. They ended up publishing a paper on just one of the unexpected ways that multiple antibiotics can get in each other's way, and there's more research like that done by others. It may well be that trying to go after all of the likely infections at once isn't likely to work as well as going after them one-at-a-time, because of things like that. That's rather the way my doctor did things in the beginning anyway, back when everyone thought there was only one infection present.
I have links I can give you if you or your doctor are interested (in fact, I've probably posted them so often already that everyone is sick of seeing them).
There are lots of things that can make temporary improvements in HS or improvements as long as you stick to them for the rest of your life, but that isn't always possible (high-dose zinc is NOT recommended for long-term use, to name one example), and the only thing I know that's ever given LASTING improvement in HS is antibiotics - in spite of reputation that antibiotics may have taken on for only being good for temporary relief.
Identifying and removing some inflammatory factor from diet may offer some people lasting benefits, but least in my case, the dietary changes haven't really produced lasting improvements because in the beginning, they weren't an issue, and now once I get rid of one offending thing, then there's often another new one. There's nothing on my list of things to avoid because they can cause flare-ups that gave me trouble in the first six or eight years of the twelve that I've had HS, whereas these days I wonder what I'm even going to eat. I suspect that I"m not the only person whose dietary sensitivities are more recently acquired, we have a lot of people with HS who are surprised to discover they react to foods from the nightshade family (potatoes, tomatoes, etc) who might have noticed it earlier in life if it had been a life-long thing.
Another possible drawback of dietary management of HS is that there seems to be no end to the way that offending substances such as disease triggers can be represented on food labels, so even if you devote your life to constantly reading labels, you can have incidents no matter how careful you are. Likewise you can find items from your list of things to avoid in the least expected places. All I have to do is let my guard down just once, and another one has gotten past me. Then there's the part about the number of people I've insulted because after they were kind enough to fix me a meal, I don't dare touch it because I don't have a list of what's in it (the insulted person is usually, but by no means limited to, my wife).