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 discovered my first boil in the shower at the age of 16. It completely freaked me out because it was as if this little bump I had on the side of my breast turned into an erupting Mt. Vesuvius! Back in 1986, no one knew what my condition was or what caused my skin to do that. In my 30 years with HS, I have seen a plethora of doctors, received countless diagnoses, and tried every treatment known to man. I am thrilled to see the advances in the treatment of this debilitating disease. Tomorrow I start the Humira injections. I haven't been this hopeful in a long time. The side effects are a bit disconcerting and the amount of shots needed is a little freaky, but I am hearing that this is my best shot (pun intended) at getting some well deserved relief. I am going to try and document my experience in the hope that I may be able to help others.
Stay tuned...
Humira is an antibody against the inflammatory substance TNF-a so it's an anti-inflammatory. Some of the other things that HS patients use for relief and disease management (zinc, turmeric) may also share that property, so you might still have some recourse of some kind in that category if you don't tolerate the Humira well.
It seems to become increasingly clear to me just how many ways there are for doctors to miss the mark with antibiotics for HS and related diseases. On the one hand doctors have some great, well-tested protocols for antibiotic use, but on the other hand there are things that often enough fall outside those protocols where they're not really getting a lot of good advice from trusted sources on how to help patients, and HS seems to be one of them.
Hopefully you may still stand to benefit from careful use of antibiotics if your doctor is willing to bite the bullet and do the microbiological work it may take to make the right choice of antibiotics if there aren't good guidelines readily available. Sometimes there are but sometimes there may not be, simply because infections aren't easy to generalize once you get beyond the more typical specimen.
(Doctors may also benefit from at least a rudimentary understanding of microbial phenomena like biofilm infections if good guidelines aren't readily available. Biofilms often have a stubborn streak that's a suspiciously good match for the stubborn streak of HS, have been detected in HS patients, and may be more involved in HS than they usually get credit for).
What I believe is that my doctor generally 2/3 cured my HS by finishing off two of the three most troublesome organisms infecting it, with a single old fashioned antibiotic, probably erythomycin (ironically they might never have thought to try this is they'd known at the time I had HS). From the sound of it, that's done me quite a bit more good than I could have gotten from one of the cocktails of different antibiotics that are popular in HS research lately.
Thankfully my doctor didn't make what may be a common mistake with HS, misdiagnosing it as MRSA. That mistake too can often lead to the wrong choice of antibiotics.
So hopefully there are still a number of options open to you if your doctors will be careful, even if the Humira doesn't do what your HS requires of it. Again, best of luck to you!