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,...
FIRST THINGS FIRST: I am NOT a medical professional. I am merely the mother of a 17 year old daughter with HS who has done a ton of research. This is NOT a medical opinion simply a reiteration of some of the things Ive learned and some of the things I believe.
It seems that one of the commonalities that many HS sufferers face is that many of the doctors theyve seen from primary care physicians to dermatologists to surgeons - simply do not know what to do to help. I believe that this is because they have approached the condition from the wrong prospective.
Many, if not most, and mainly because of lack of experience/knowledge, approach it as merely a skin condition. This is why the first step always seems to be a progression of prescriptions for antibiotics and perhaps topical treatments. Which almost never work, and if they do, only for a short period of time. This includes the doxycyclines, minocyclines, the combination of clindamycin/rifampicin, etc. all the way up to the retinoids, i.e. Accutane. It is understandable. In the main, if a dermatologist does not specialize in the more recalcitrant skin conditions, such as plaque psoriasis, this is what they know and this is what they are trained to do.
After much research and in talking with our new specialist, who yes, is a dermatologist, but one who specializes in the harder cases, I have come to believe that Hidradenitis Suppurativa is an autoimmune disease. When approached from this perspective many HS symptoms/manifestations/complications fall into place.
Why is HS so resistant to antibiotics? Because, of course, first and foremost, there is NOT a bacterial cause. It is not an infection and it is not because of lack of cleanliness or exposure to environmental factors. It is an internal condition that manifests in this particular way through skin lesions. (Which by the way, is why I am extremely against calling it Acne Inversa as many have tried to do I think it trivializes the condition and makes it MORE likely, rather than less, that a medical professional will mistreat.)
Why do the wounds not heal properly? Again, because it is an internal condition, and not wounds properly understood. No amount of topical agents will fully heal the lesions. There are many that may provide temporary relief, but only that. (Includes corticosteroid injections, which do help in the short term, but are not recommended for long-term use).
Is there a genetic connection? I believe there is. By genetics, I dont necessarily mean inheritable (although there does seem to be many cases where HS runs in families, it is not so in ours). It seems to me that research into other conditions such as Rheumatoid Arthritis, Plaque Psoriasis, Crohns and other diseases place HS along the same lines. Links to the PTPN22 gene. Which is why so many of the biologic drugs used for those conditions, such as adalimumab (Humira), etanercept (Enbrel), and infliximab (Remicade) show promise for HS sufferers.
Autoimmune disorders are notoriously hard to treat. For every Lupus patient that benefits from one therapy, another sees no result. The same can be said for Crohns sufferers and a whole list of other conditions. For most, at this point, its trial and error. And many discover that a particular drug may help for a while and then plateau, at which point another drug will be introduced for a time before the patient goes back to the first. It, to put it pointedly, sucks. Not just for HS sufferers, but for many others who suffer from these conditions.
THERE IS HOPE REAL HOPE!
While it is true that HS is severely underserved in the medical research area so few clinical trials/research into the disease, there is some hope. First, because there ARE a couple of HS clinical trials going on right now Stage III trials are underway for Humira and HS. It, so far, has seen fairly good results, and our doctor thinks that Humira will be approved for HS within a couple of years. Second, there is a great deal of research going on into what I call ancillary conditions Crohns, psoriasis, lupus, rheumatoid arthritis, all of which, I believe will be beneficial to HS sufferers.
Second, though this one has a much longer timeframe genetic mapping is THE cutting edge for recalcitrant disease treatment and its happening right now. Someday, I believe, medical researchers will find a way to map each persons genes and be able to design individual therapies particular to each persons disease/condition.
Whats working right now -
My daughter has been on a combination of Humira/Methotrexate/Finesteride for one month. The doctor has not prescribed any wound care as such. She has experienced almost no leekage for three weeks now, no new outbreaks and her wounds, while not necessarily healing are much, much less angry and she is in virtually no pain. It is working. For how long, we dont know, but were almost giddy with excitement at how it has worked so far.
Additional note: This is not to say that some natural remedies, diet changes, surgery may be helpful, also.
In sum, I firmly believe that, properly diagnosed, HS is an autoimmune disorder and should be treated as such.
Have at it.
It seems that one of the commonalities that many HS sufferers face is that many of the doctors theyve seen from primary care physicians to dermatologists to surgeons - simply do not know what to do to help. I believe that this is because they have approached the condition from the wrong prospective.
Many, if not most, and mainly because of lack of experience/knowledge, approach it as merely a skin condition. This is why the first step always seems to be a progression of prescriptions for antibiotics and perhaps topical treatments. Which almost never work, and if they do, only for a short period of time. This includes the doxycyclines, minocyclines, the combination of clindamycin/rifampicin, etc. all the way up to the retinoids, i.e. Accutane. It is understandable. In the main, if a dermatologist does not specialize in the more recalcitrant skin conditions, such as plaque psoriasis, this is what they know and this is what they are trained to do.
After much research and in talking with our new specialist, who yes, is a dermatologist, but one who specializes in the harder cases, I have come to believe that Hidradenitis Suppurativa is an autoimmune disease. When approached from this perspective many HS symptoms/manifestations/complications fall into place.
Why is HS so resistant to antibiotics? Because, of course, first and foremost, there is NOT a bacterial cause. It is not an infection and it is not because of lack of cleanliness or exposure to environmental factors. It is an internal condition that manifests in this particular way through skin lesions. (Which by the way, is why I am extremely against calling it Acne Inversa as many have tried to do I think it trivializes the condition and makes it MORE likely, rather than less, that a medical professional will mistreat.)
Why do the wounds not heal properly? Again, because it is an internal condition, and not wounds properly understood. No amount of topical agents will fully heal the lesions. There are many that may provide temporary relief, but only that. (Includes corticosteroid injections, which do help in the short term, but are not recommended for long-term use).
Is there a genetic connection? I believe there is. By genetics, I dont necessarily mean inheritable (although there does seem to be many cases where HS runs in families, it is not so in ours). It seems to me that research into other conditions such as Rheumatoid Arthritis, Plaque Psoriasis, Crohns and other diseases place HS along the same lines. Links to the PTPN22 gene. Which is why so many of the biologic drugs used for those conditions, such as adalimumab (Humira), etanercept (Enbrel), and infliximab (Remicade) show promise for HS sufferers.
Autoimmune disorders are notoriously hard to treat. For every Lupus patient that benefits from one therapy, another sees no result. The same can be said for Crohns sufferers and a whole list of other conditions. For most, at this point, its trial and error. And many discover that a particular drug may help for a while and then plateau, at which point another drug will be introduced for a time before the patient goes back to the first. It, to put it pointedly, sucks. Not just for HS sufferers, but for many others who suffer from these conditions.
THERE IS HOPE REAL HOPE!
While it is true that HS is severely underserved in the medical research area so few clinical trials/research into the disease, there is some hope. First, because there ARE a couple of HS clinical trials going on right now Stage III trials are underway for Humira and HS. It, so far, has seen fairly good results, and our doctor thinks that Humira will be approved for HS within a couple of years. Second, there is a great deal of research going on into what I call ancillary conditions Crohns, psoriasis, lupus, rheumatoid arthritis, all of which, I believe will be beneficial to HS sufferers.
Second, though this one has a much longer timeframe genetic mapping is THE cutting edge for recalcitrant disease treatment and its happening right now. Someday, I believe, medical researchers will find a way to map each persons genes and be able to design individual therapies particular to each persons disease/condition.
Whats working right now -
My daughter has been on a combination of Humira/Methotrexate/Finesteride for one month. The doctor has not prescribed any wound care as such. She has experienced almost no leekage for three weeks now, no new outbreaks and her wounds, while not necessarily healing are much, much less angry and she is in virtually no pain. It is working. For how long, we dont know, but were almost giddy with excitement at how it has worked so far.
Additional note: This is not to say that some natural remedies, diet changes, surgery may be helpful, also.
In sum, I firmly believe that, properly diagnosed, HS is an autoimmune disorder and should be treated as such.
Have at it.
spaceteddy
I live in holland europe but next tuesday i go to a new hospital and admit in a clinical trial on biologicals. I have not yet spoken them but i will keep you updated
deleted_user
I have to say I completely agree with your research findings because mine are similar if not exactly the same. I was hit with my first lesion in 09. My doctor thought it was simply a staph infection. I had started a new gym membership a few weeks earlier so that seemed plausible. Until a year later I'd tried so many antibiotics my intestines were suffering, and had 2 surgeries. Quit my job and school, and had filtered through 5 doctors. 2 dermatologists, 2 wound care therapists, and one surgeon. Until finally, last year, I found a dermatologist who specializes in this disease and knew something that could help. She has me on Humira-- which helps-- and clindamycin/rifampin which for me, kills the infections I am so prone to. I also take bleach baths 3 times a week to keep the wounds clean. I am not as fortunate as some who don't get infected. I get infected as soon as I lax on the baths or run out of clinda. Through my own research I've altered my diet. I was already a vegetarian, but I added to that light veganism.. avoiding most dairy and no animal oils or fats whatsoever. I also started eating whole wheat, and when that causes flares I go gluten free which really helps. I did a regimen of turmeric for a while, but the effects were so mild I don't do it as much unless I am desperate. But since starting humira, I've been doing much better. AVOIDING WHITE FLOUR AND HIGH FRUCTOSE CORN SYRUP MAKES A HUGE DIFFERENCE. I can't stress that enough. I ate a cupcake on vacation in 10 and came home with an ulcer that had to be operated on. For me, I also have to take a lot of supplements because I have iron anemia, low vitamin D, and of course the protein. I am so much better off than I was before. I'd gotten so sick at stretch that I lost 56 lbs, had bloody stool, slept 18 hrs a day and couldn't even stand long enough to shower. Keep in mind in 09 I was fully utilizing a gym membership. Needless to say, something I mentioned above worked out for me. I hope everyone finds the treatments they need to get better. :)
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