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 sure this has probably been much discussed here before, but since it seems like I only have to type the name "Humira" anymore before I start seeing banner ads for the product everywhere I go on the Internet, it gets hard not to be reminded of the subject.
To the best of my understanding, Humira is an artifical antibody against a human protein called TNF-a. TNF-a promotes inflammation. Humira is an antibody, which attaches to TNF-a and neutralizes its ability to cause inflammation, thus decreasing symptoms of HS or other conditions that seem to be driven by inflammation.
I devoted a considerable amount of research to the subject when first trying to learn why everyone seemed so excited about Humira and whether there was really cause to be that hopeful. One of the things that I learned is that other popular treatments for HS may also have this ability, which may include both the turmeric and the zinc that are very popular, and may also include a number of other nutritional supplements less discussed in the context of HS, from popular "bioflavonoids" like quercetin or lutein, to theanine.
I've been trying quercetin, lutein and etc lately in hopes of getting some help with my lung trouble - the improvement is often remarkable but it seems like in a couple of days I'm having to give them up again because things start to get worse (I also have this problem with steroid inhalers), and it has me thinking about the ability of things like Humira to lower the body's resistance against infection. Quite possibly anything that lowers TNF-a may carry the same concern for the same reason? (Lutein seems helpful but actually seems to make my HS flare immediately, and I don't really seem to have a good explanation for that).
It is making me glad I haven't tried Humira because as an antibody that is one thing that concerns me, is that I suspect it may remain in the system for awhile. Some of us have reported it making symptoms worse rather than better and I dread being stuck with that, whereas at least if supplements cause trouble, they may clear from the system much more quickly, such as in a day or two.
Anyway, my point as previously is that paying attention to TNF-a lowering properties may both help us to understand why some things may be helpful for HS, and help us to be able to recognize when other supplements may have potential benefits for HS because of TNF-a lowering properties, as long as we are mindful of the same precautions and concerns that go with Humira. It also gives us the opportunity to carefully and inexpensively experiment in hopes of getting some of the same benefits if we happen to be in a situation where Humira doesn't happen to be available to us.
As always, though, my best hope for HS lies in careful, knowledgeable, and deliberate use of antibiotics against HS - not just any antibiotic, and not because of shaky rumors that antibiotics have anti-inflammatory "side-effects" in HS cases, but understanding that HS may often involve infection, multiple types of infection (mixed aerobic/anerobic infections may be very typical), and that antibiotics and dosages may need to be tailored for these types of infection to get more than only temporary results.
I continue to believe that my own physician made a permanent improvement in my HS simply by accidentally picking an antibiotic that works on the species of Staph that seems to plague HS patients, before they learned it might be HS. I also continue to believe that I still have HS because they didn't get all of the infections out, that there is still probably Strep and anerobic bacteria (Prevotella and Bacteroides seem very typical) that have been left behind.
At the end of the day, though, if HS is caused by infection (which can probably account easily enough for the symptoms) or routinely features infection, Humira probably isn't approved for treating infections whereas antibiotics are.
As always, our very best HS research comes from the Pasteur Institute, which is hopefully easy to remember since hopefully all of us of have heard of Louis Pasteur. Their spokespersons have been years now asking if we should begin to question the idea that antibiotics are helping us because of anti-inflammatory or immunosuppressive side-effects, including that the list of antibiotics that may offer that kind of temporary help may be larger than we could reasonably expect if that's how they were helping us.
One possibility is that the often low-dose antibiotics HS patients are given are enough to suppress but not kill infection, so that symptoms decrease as long as we are taking them, but return as soon as we stop. We might be able to get much more help out of antibiotics if thing like that were better understood, and it's very sad to think of what may be our best resource (antibiotics) being wasted or misused because of widespread misunderstanding that remains about the nature of HS and HS research.
I don't fault the Mayo Clinic if they are simply repeating an error that has persisted through numerous medical textbooks on HS, but they seem to be trusted source for many doctors (every time I have a new diagnosis the doctor usually hands me a print-out of their page about it) and if the information isn't reliable, our care and our health may suffer for it.
As ever, it saddens me that the Mayo Clinic should have poor information on HS that discourages doctors from think there's infection present, when the Mayo Clinic has excellent materials on the particular species of Staph that is so closely associated with HS in research. (People from the Mayo Clinic have also participated in some excellent research on getting rid of this unusual Staph species).
As always, though, people are only human and the Mayo Clinic deals with a tremendous number of diseases, so mistakes can and apparently do happen on occasion. I continue to hope that one day soon things will get sorted out so that all of us can receive better care.
Perhaps it's Dr. Jemec I should be attempting to contact since he is the editor of most of the medical textbooks to which the Mayo Clinic authors oh HS are most likely turning in their quest to consult the best sources in preparing a page on HS. Almost unbelievably, Jemec's is one of the two HS studies that seems to continue be mangled and misrepresented, even when he is the editor of most of these textbooks.
These two studies (Jemec et al and Lapins et al) seem to be the studies that are considered when sources decide to say that "HS isn't caused by infection" because infection isn't found most of the time - the two studies even after misrepresentation DID find infection most of the time, and more often when the mistakes are ironed out. The better the methods used to look for infection, the more often it is found, in up to 100% of patients in some of the best studies.
Ironically (and frustratingly) while my doctors haven't seemed very willing to listen to me once they're read the Mayo Clinic page, or have even gotten argumentative with me on occasion, my psychiatrist who I'm seeing about anxiety and Tourette's hears about my troubles getting my doctors to treat me properly for infection and says I should tell my latest doctor about it. I've been trying to tell my doctors about it for five years now, but at least my psychiatrist is listening, maybe that's a start?
Suffice it that all of us may be the victims of misunderstanding or perhaps even bureaucracy almost as much as we are victims of HS itself. A bit depressing, but still full of hope.