Hello everyone,

I have HS. My mom has it. My brother has it and my maternal grandmother had it. Beyond that we don't know how far back it went because people tend to not talk about HS except with very close friends or other sufferers. I have the most severe disease out of my other two family members - with HS hitting all of the fun spots, groin, armpits, under the breasts and weird spots that really don't have much friction going on, like the side of my torso and one area near my hairline on the back of my neck.

Despite weight loss, quitting smoking and eating better my disease has progressed to the point of daily draining and significant pain.

I am headed to Mayo in November for their HS Clinic. I'll see a Derm, go to a class about weight loss and another class about relaxation and stress reduction. Then will possibly be scheduled to see more doctors during the week. I am hoping for some actual results and not the fluff that I've experienced for years by doctors that haven't a clue what to do about this disease.

My local dermatologist believes that I need to be extremely thin and the only way to treat the disease is to inject Kenelog into each flare as they come. I would be in her office every day if I was to follow her HS treatment. I am also, unfortunately, allergic to the preservatives in steroid injections. I break out in hives and then generally have severe facial and torso folliculitis in the weeks following an injection....but with this disease, we are always willing to try and get relief, even if it means putting ourselves through some other affliction.

Anyway - I'm very anxious to get my appointment underway and to see if Mayo has any new idea's about how to treat this. I know Humira and Remicade are now being used but I don't know if people with other conditions can use those medicines safely.

I just want my life back.