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.
All joking aside, I am glad that your daughter has been able to find some relief. I am having to go the surgical route, as my insurance has denied me the use of Humira, or other drugs similar to, simply because I do not have a "condition" for which they are willing to cover the use of said drugs.
Although they are more than happy and willing to pay out thousands of dollars for surgery multiple times (which to me seems like a complete waste of taxpayer money, as I am on Medicaid). Why not let me try something less expensive and hope it works vs blowing thousands of dollars on surgery that may not keep the HS from coming back and/or spreading? But that is government idiocy for ya.
I too agree it is improperly handled. I can't recount how many doctors I have seen that either didn't care, were too scared to do anything, or just didn't have a clue as to how to help. I'm lucky enough to have a primary doc that understands this a little, does not mind me coming to her with new information about HS, and has actually read about this disease for herself. So many just go home at the end of the day and could care less about looking up this "obscure" disease that only 1 of their patients have out of the ton of them they see every day.
I do agree that a team of doctors working towards the common goal is the ideal way to go, and I'm so glad that you have that Amber. (also much love to you and yours and give the little guy some love from me!
Amber
She has been heckling the heck out of Medicaid about this. But they are as pig headed as a summer day is long. She is still trying to get them to approve me to at least do a trial run in some form or fashion. But I am going to the surgeon to see if I can at least get some temporary relief from the monster in my inner left thigh. I can't go or do anything without having it bandaged, and the tape is literally eating my skin up. Even though I am using the gentlest tape out there. I would use an Ace bandage, but when I tried it..it just kept sliding off and down, so..grumble...lol
rykscoogan, you're more than welcome! I couldn't believe it when they turned me down for Humira but was willing to pay for 3 seperate surgeries, one for my inner thigh, and one each for each of my armpits. Not to mention the danger involved of being put under repeatedly! They may be trying to look at it as years of me being on Humira (or similar meds) vs a 3 surgery event...which still to me I would think the Humira (even if I took it until I was 90) would be a cheaper alternative. But for some reason they also seem to think that HS is something that surgery can "cure"(idiots).
We are still going to push the issue with Medicaid, we just can't give up. But with the condition my left inner thigh is in..I gotta do something to try and get some relief with it, despite the fact it may be short lived at best. It's weird cause since this little bugger showed up, the rest of my spots have been relatively calm..sort of..although I know that that will be short lived as well.
rykscoogan, I will keep you and your daughter in my prayers that they continue to extend the insurance to cover the Humira for your daughter. HS is such a pain and we need all the tools we can possibly have to deal with it.
I wrote all my story in this blog: http://mycureforhidradenitissuppurativa.blogspot.com.br.
I understand exactly why you think it's autoimmune. It is certainly not caused by bacteria. actually, it's amazing that the wounds don't get infected more often! They seem immune to bacteria for all I know! I couldn't get them infected even when, in desperation, I would try anything to remove them from me, including acts of minor self-mutilation... it's also not a skin condition either, for it certainly comes from within, hence the autoimmune hypothesis, which I think goes in the right direction, only not entirely.
I believe from experience that HS is caused by our bodies' inability to process something present in "mammal" food, possibly lactase, the enzime present in lactose that people with lactose intolerance (which I also have) can't digest.
Now, common wisdom claims that lactase isn't present in mammal meat, but i think this may be innacurate or something. Maybe the lactase digested by calves and pigs become something else in their flesh that still harms us when we eat it. I have no idea what this happens scientifically. All I know is based on my experiences and observations only.
anyway, that's why it seems autoimmune: our bodies, being incapable of processing MAMMAL products, start accumulating and reacting to them and that leads to the crazy, irrational, my-body-is-destroying-itself "feel" of this bio curse as our bodies eventually try to squeeze the indigestable junk out. It does come from us, this disease, but not directly, as in diabetes and so on. Without MAMMAL products, all dairy and all meat from mammals, our bodies work just fine.
It takes a while for the junk to be elimated, though, around a year in my case, and larger "boils", I think, should be surgically removed to speed up the process. at first, when you stop all in-take of mammal food, it gets worse and then much, much, much better until nothing is left. When you start sensing a funky, somehow "sour", smell in your urine, you know your body is slowly getting rid of it now that you don't stuuf it to the brim with whatever it is that our bodies can't digest in mammal meat and dairy. it worked for me to perfection.
Many people say that dairy, red meat and other foods cause their flares, but there was no logic to it. My premise was to find the link between red meat and dairy and that link is obviously mammals. I think this wasn't noticed before because when they stop eating red meat, people still eat pork. that's why it took me so long to figure this out. It never occurred to me that red meat was bad to us not because it's inflammatory, but because it comes from a (either in its infancy or by the time it was killed) mlik-drinking animal.
This really worked for me. unfortunately, I have no pictures to show because I could never bring myself to immortalize this biological demon. Anyway, it costs nothing to try. Stop eating anything that has any ingredient extracted from any MAMMAL and I think it might solve your problems. this literally cured me after 10 long years of hallucinating suffering. I hope I can help you as well. If we don't cure this ourselves, it seems it will never be cured. doctors KNOW NOTHING about HS, nothing at all!
thanks!