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,...
Hey everyone! I am so happy to have found this support group! I have been living with what I think is HS for almost 10 years. I haven't yet been diagnosed, but hopefully now I am on the path to getting help for it! I first started getting the skin problem on my inner thighs when I was around 13-14 years old. I am about to turn 23 now and it seems to be worse than ever, for me. Right at this moment I have about 5-6 abscess on my butt & thighs. It has never been this bad for me, like this many huge ones at once. And they keep appearing!!! It's usually only half that amount or less. I am just so relieved to find out about HS and that I am not the only one going through this. My legs have so so many scars, but now they seem to be spreading more to my butt and groin area and I'm getting scared! I don't want these all over my body and the scars. I don't know much about HS yet, so I don't really know what to expect. Does it spread a lot? That is my main fear. Why is it getting worse? What can I do about it? I just want it to go away. It is so embarrassing and I always hide it. That is why I have never gotten any real treatment. I have had a few rounds of antibiotics for single bumps, but I have never seen a doctor that has understood that this does not go away. They keep giving more antibiotics and it doesn't work. It always comes back!!!! I'm making an appoint with a new doc and going to make sure she knows about HS so she can see if I have it. Any one have any advice for me or want to share your story? I would love it. Thank you.
These days I would never mind the Mayo Clinic whatsoever, the CDC seems to have actually posted some of that amazing work on HS by the Pasteur Institute that is so exciting to HS patients. That's more like it! Hooray and thank you, CDC!!!
It's hard to tell anyone exactly what to expect with this, after it gets going it seems to be able to behave differently depending on which bacteria end up in it and how they interact with each other or how they interact with antibiotics and other treatments and etc. This may be what makes it hard for us patients to exchange advice - other than generalized responses to infection like inflammation, what works for one person may get less and less likely to work for another. It can be trial and error - sometimes painful - to find out what works, I've certainly tried things that have backfired before.
I can give a try off the top of my head, you might want to print out parts that may be useful to yourself or your doctor rather than memorize it on the spot, I'm like a book on HS that's just waiting to happen. I'm going to throw in some stuff that seems pretty complicated even to me still but it just might help the right doctor deal with a stubborn case of HS if that's what you or anyone else might have. I'll leave out links and references since I've posted a number of good ones recently I think.
A number of us seem to benefit somewhat from things like zinc supplements (do not exceed recommendations for safe doses), turmeric (watch out for possible complications like stomach bleeding and probably take with food to reduce this risk as with aspirin or ibuprofen, I would guess), and just simple things. Loose fitting, breathable fabric pants have been a big blessing to my HS management.
Effective stress management can also be very helpful. Us HS patients seem to usually be sensitive to inflammation and may be somewhat universally candidates for anti-inflammatories, so avoiding foods that may contain inflammatories like carageenan, or avoiding immune boosters that may work by elevating inflammation (echinacea, astragalus, ginseng, milk thistle etc) may be helpful (it certainly has been for me!)
I do try somewhat to avoid contagion risks, being aware that I do have open lesions, I try to bring disinfectants if I'm away from home to use on showers/toilets, sometimes I bring a towel to sit on particularly at the doctor's office for the sake of others but especially for the comfort and safety of myself - being a little of a "germ-o-phobe" probably has helped keep my HS from taking on more secondary infections.
There are several possible general outcomes with antibiotics - that they don't make an improvement, that they make things worse, or that they make things better. Each of these as well as the phenomenon of relapse, may have a number of particular reasons associated with them. For example,
1. No improvement: antibiotics not used correctly (taking doxycycline with mineral supplements is one example), wrong antibiotics, all significant microbes present are resistant to the particular antibiotics used, or one or more of the microbes present are degrading the antibiotics to the benefit of all microbes present.
(an example of this last scenario would be when a microbe produces a beta-lactamase enzyme that digests beta-lactam antibiotics - penicillins, cephalosporins, carbapenems etc are beta-lactams. Sometimes a beta-lactase inhibitor like augmentin prescribed with the antibiotics can help prevent that.
2. Partial improvement: Some of the significant microbes are susceptible to antibiotics used.
3. Condition worsens: Some of the significant microbes may have been competing with or restraining other microbes present, so that removal of certain microbes allows remaining microbes to proceed more aggressively. A common example of this sort of thing is when oral antibiotics are reported to produce overgrowth of "bad" bacteria by killing off the "good bugs" that normally compete with them.
4. Complete improvement/remission: All significant microbes present are susceptible to antibiotics used.
5. Relapse: 100% killing of one or more particular microbes has not been achieved, allowing them to make a comeback when antibiotic use is discontinued. Sometimes microbes can be protected or shielded from antibiotics by: colonization with fungi or fungi-like microbes (Actinomyces seems common in HS), by unusual tissue barriers - cyst walls or epithelialized sinus tracts for example, may pose an obstacle to SOME antibiotics. Also, since there seems to be a high level of possible involvement of gut microbes in HS, overlooking them with antibiotics may provide a source for their recurrence.
I'm personally defining "significant" microbes as any that toxic enough in the the numbers present to inhibit the immune system from cleaning up both infections and debris or damaged tissues.
In the Pasteur Institute studies, complete remissions of HS were seen even in a meaningful percentage of the worst cases - it is amazing what the immune system is capable of cleaning up when enough of the bugs that are paralyzing it in the effect regions get a good whipping with antibiotics. These complete remissions included remission of hypertrophic scarring.
Since so far, the credible microbial studies of HS seem to show Staphylococcus as the first infection to arrive on the scene, this may a very important microbe to be careful with. I'm not sure of this, but going over some things again recently there may be some trouble with recurrence of Staph when its treated with an antimicrobial that targets a microbe's cell wall synthesis. Things like clindamycin and doxycycline might be better choices for Staph eradication provided the Staphylcocci in a particular patient actually are susceptible to those antibiotics.
Antibiotic susceptibility testing is most likely recommendable if it's available to the patient - I'd certainly recommend it anyway. Doctors should attempt to be as sure as possible of what they're aiming at and what will actually work on it before they go shooting in the dark with antibiotics, otherwise both treatment failures and superbugs might result. Conversely, a doctor might go in with a broad-spectrum antibiotic like a carbapenem if that option is available to them, but as already noted with Staphylococcus, that may not be able to take all the guesswork out of it them.
A lot of the possible targets here should be obvious - Staph, Strep and other well-known big troublemakers frequently found in HS should be eradicated - Pseudomonas, Clostridiales and others probably likewise if they achieved a significant presence.
If necessary and if possible, try to keep your doctor from making these common mistakes:
1. Thinking of the infections that complicate an incurable disease (HS) as having also become incurable. HS has been reportedly been cured on occasion, including by antibiotics. A number of things can try to complicate antibiotic treatment and often do, but infections are still treatable with careful treatment.
2. Consulting outdated or erroneous information like the Mayo Clinic page that may trick caregivers into underestimating the role of microbes in producing HS symptoms (or overestimating the role of other factors in HS - usually lifestyle factors. Caregivers may also be frequently misled by misinformation into overestimating the appropriateness of surgical techniques).
3. Ignoring the need for timely treatment. So far my caregivers have been duped into thinking that there's no urgent need to treat this, when in fact the longer it goes untreated the harder it may become to treat, to figure out, and the more likely it may become that some especially dangerous microbe may end up it - not that Staph, Strep and other frequently found microbes in HS weren't potentially dangerous enough already, but there are even worse things that can come along.
4. Underestimating the role of Bacteroidales in HS - most typically Bacteroides or Prevotella. They are very common isolates from HS lesions and they may be big players in later stage (Hurley stage 2 or 3) HS. I am speculating, but it may be the zinc metalloprotease toxins whose genes are widely distributed in this family of bacteria that help play a key role in formation of sinus tracts and other characteristic aspects.
It may also be a role for zinc metalloproteases that allows for advanced HS without Bacteroidales - one of the earliest studies of HS by the researchers at the Pasteur Institute involved a case of HS associated with mastitis that was characterized by Corynebacterium and Proteus, which also appear to have genes for zinc metalloproteases.
Bacteroides and Prevotella bacteria can be normal inhabitants of the human gut, which may help them to be frequently underestimated when they appear in HS, but they really have no business in a wound and may be so well adapted to human hosts that it's very hard to the immune system to remove them from wounds or lesions while they live.
They may also try to evade detection by various means, such as growing too slowly to be detected before cultures are discarded, by appearing as the occasional specimen that can't be cultured by the usual means. It may be common for Prevotella to take over the Petrie dish, possibly concealing some related bacteria like Bacteroides that may be even bigger troublemakers. It's been very hard to me to sort out which is more of a worry since I've had both before.
Lastly, Bacteroides fragilis, which the book on HS by van der Zee cites as one of the 3 most common anaerobic bacterial to be isolated from HS abscess along with Staph and Strep, can apparently come in some remarkably antibiotic-resistant strains, which may help result in some HS cases that can be very hard to treat successfully (mine is probably one of them and I am about to have a doctor check me for this type of superbug).
This can also involve these bacteria showing resistance to antibiotics they may never even have come in contact with before. In case reports from clinical encounters with these MDR strains, thus far it seems they HAVE been able to find antibiotics that would work, but doing susceptibility testing in order to find them was obviously HUGELY helpful.
Since the reports so far of MDR Bacteroides seem to show different patterns of antibiotic susceptibility in them, it probably makes susceptibility testing even more important.
My theory is that it's the combination of Staph and one of these Bacteroidales (or possibly a different zinc metalloprotease producer as previously mentioned?) that produces the sinus tract phenomenon, and that my doctor stopped sinus tracts from forming on me almost ten years ago by killing the Staph on my person, possibly with doxycycline.
(Oddly enough, the nasty species of Staph - Staphylococcus lugdunensis - that is probably the only Staph ever credibly proven to show up in early HS, is not know for being very hard to kill - MRSA it isn't, although MRSA can sometimes be a complication of HS that hasn't been treated in an expedient manner).
Please, though - never be afraid to show this stuff to a doctor. There are some scary things that can show up on the scene sooner or later - again, as if untreated Staph and Strep weren't already a concern in themselves, and to judge from studies it's highly likely for either one to be present in a troublemaking sort of way in HS.
If your doctor proves uncooperative, try to help them understand the disease if you can, or try to find another. I'm going back to my old one just because he was a good listener (sometimes, lol) and was enough of one to endorse the diagnosis of my HS that my wife made. I'd still know nothing about this disease if not for those two. Hopefully I know enough now that we might get a lot of mileage out of doctor who can listen.
It is hard to deal with this and I totally understand where all your frustration and anger comes from. I personally was misdiagnosed (and still am) depending on my doctors mood for over 25 years. Why I am going to a new doctor.
THE BIGGEST THING I CAN TELL YOU IS TO CUT NIGHTSHADE VEGETABLES OUT OF YOUR DIET. It is a pain and most of my favorites but peppers, potatoes, tomatoes, eggplant, paprika, huckleberries, and tobacco.
After years of research since my doctors were worthless I found this. I cut those foods out of my diet and all the sudden I was about 1/10th as bad as I was before. Before while I ate those things I would have days and nights where I would roll around in pain until things opened up. Now that extreme doesn't happen.
Yes I still am afflicted. It is painfull but not to the extent I was before.
Please try the diet I have said as it hopefully will keep you from getting into deeper stages like I am in. (((hugs again)))
From my little bit of research so far, I read that HS is probably caused by inflammation in the body. My mom has bad inflammation in her eyes (all the best eye doctors in Atlanta can't figure out why) but she does not have HS. She has stopped eating sugar, really processed foods, & gluten. She said it makes her eyes feel better and that now when she eats that stuff she will have a bad day with her eyes. I really don't want to change my diet lol but I eat a lot of sugar and carbs so maybe that will help the inflammation in my body, idk! I have also had an inflamed stomach lining before (If I remember right it is called gastritis) I was severely sick for months before they found a treatment to fix it, so that just makes me believe even more that I probably have too much inflammation in my body. I don't know much about this stuff but these are just my ideas from what I've read and been through. I am just starting to put this all together.