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,...
Saw an amazing dermatologist today!!! (Dr. Michaels in Newport, RI - go see him!) He was knowledgeable and did not pretend that anyone really understands HS. He has seen many cases, unlike most doctors.
He said heavy people tend to have HS more often BUT admitted the worst case he ever saw was a thin person. I am heavy now but I first got HS before I got fat.
He said nobody knows if this disease is auto-immune or bacterial in the beginning, but the the lumps become infected and then you have an infection (or several), so that requires antibiotics. My last experience with antibiotics was worthless, but this makes sense.
He said the lumps make cysts with walls. They tend to tunnel together under the skin. I can feel the "wall" even if a cyst is not active.
Larger cysts can be drained. The cysts can be surgically excised, but they may come back. Some people need skin grafts.
My symptoms are not really terrible right now, so he prescribed topical clindamycin phosphate. I asked for the foam version (like shaving cream) because it goes on DRY, not like a greasy lotion.
Speaking of dry, he said to use a cool hair dryer after showers to completely dry off HS areas. Alcohol is ok in an emergency.
Heat and moisture are the enemies. Stay in air conditioning!
I used to have big problems on the lower half of my body (ahem), but for some reason this summer the HS took over my armpits. (It is VERY embarrassing! Have to wear shirts always.) He had no idea why the HS moved.
He does not think gluten is the problem. I KNOW GLUTEN-FREE WORKS FOR SOME PEOPLE so God bless them. Diet has no connection to my HS - and I've been looking for a connection for years! I believe the woman who wrote THE HIDDEN PLAGUE is sincere, but going gluten-free did not help me.
What I SHOULD probably do is stop all sugar, but I have not been able to do that yet.
He said there is no cure. You manage HS the best you can, but you probably won't get rid of it completely.
I hope this information helps some people.
He said heavy people tend to have HS more often BUT admitted the worst case he ever saw was a thin person. I am heavy now but I first got HS before I got fat.
He said nobody knows if this disease is auto-immune or bacterial in the beginning, but the the lumps become infected and then you have an infection (or several), so that requires antibiotics. My last experience with antibiotics was worthless, but this makes sense.
He said the lumps make cysts with walls. They tend to tunnel together under the skin. I can feel the "wall" even if a cyst is not active.
Larger cysts can be drained. The cysts can be surgically excised, but they may come back. Some people need skin grafts.
My symptoms are not really terrible right now, so he prescribed topical clindamycin phosphate. I asked for the foam version (like shaving cream) because it goes on DRY, not like a greasy lotion.
Speaking of dry, he said to use a cool hair dryer after showers to completely dry off HS areas. Alcohol is ok in an emergency.
Heat and moisture are the enemies. Stay in air conditioning!
I used to have big problems on the lower half of my body (ahem), but for some reason this summer the HS took over my armpits. (It is VERY embarrassing! Have to wear shirts always.) He had no idea why the HS moved.
He does not think gluten is the problem. I KNOW GLUTEN-FREE WORKS FOR SOME PEOPLE so God bless them. Diet has no connection to my HS - and I've been looking for a connection for years! I believe the woman who wrote THE HIDDEN PLAGUE is sincere, but going gluten-free did not help me.
What I SHOULD probably do is stop all sugar, but I have not been able to do that yet.
He said there is no cure. You manage HS the best you can, but you probably won't get rid of it completely.
I hope this information helps some people.
I've been fine for a few weeks - get lazy and eat fries - and I pay for it, lol.
Odd - it seems different diet adjustments impact people differently, but I figure I can't go wrong avoiding deep fried food...
I agree that the food link may not work for you (because everybody has different make ups) the alcat test has worked great for me, because it is customary to my body. I have had great success, but I don't have any knowledge about anyone else.
Mine are located on my Ass, Groin, and my inner/outer labia....very uncomfortable. "There is no cure" that is what I have heard from 4 doctors already. Surgery 4 times, Never healed. Had good thoughts but always never closed, or opened up again, 3 months later. It's a difficult disease to manage...and he is right about not getting rid of it completely. I have had mine for 35 years now...It is not what I want to go to the grave with. I hope someone finds a cure someday for us. That would be brilliant.
(I'm wondering it this might also turn out to be another pointer in the direction of bacteriology, since some lectins may play a role in the activities of certain bacteria?)