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Jan 9, 2017 · Hidradenitis suppurativa in Skin Health

It’s been a while since I’ve written but I’ve been to see Dr. Otley and some of his colleagues at Mayo in Rochester. It was quite the whirlwind but I was incredibly impressed with their knowledge of my disease and the options offered to me.

I am declining biologics at this time because of the scary, potential side effects.

I’ve chosen surgery! I’ll be having day surgery on the 20th of Jan. on my underarms. Wide excision with secondary intention healing. Meaning, no grafts and only very few stitches to help promote skin growth I will have large underarm scars and the healing time will be extensive. Once healed, I will have two more surgeries. I am hoping to be done with surgeries by 2018!

Why this is worth it to me. I am absolutely exhausted all of the time. I have swelling in my arms and hands because my lymph nodes are blocked and this will only get worse as my disease progresses. I want to really live again and I think this will be the beginning of that journey back to some health.

I’ve had so many medical problems in my life and I feel like my 20’s and 30’s were dominated by doctors and medicines, surgeries and a lot of fear and stress. I’m hoping this will give me some time to experience life as a healthy person, if only for a while!

I’m very excited and hopeful. It’s been a long while since I’ve felt this way.

Hope all is well with everyone that has posted here.

Oct 26, 2016 · Type 2 diabetes & questions about how to better manage diet in Diabetes/Endocrine System

I had the same reaction to Metformin. Congratulations on your A1C being near normal!
I manage diet mostly with portion control. I don’t restrict or deny myself my favorite foods, but I eat less of everything. I only drink water and coffee as well. No pop/soda or juice generally.

Oct 26, 2016 · Hidradenitis suppurativa in Skin Health

Thank you @kanaazpereira !

I appreciate the information. I doubt I’ll be eligible for the biologic meds but I’ll find out more on the 7th of November when I see Dr. Otley.

I will be expecting the surgical option to be my best option. I’ve seen two plastic surgeons in my area and both didn’t really know what to do except remove tissue and do breast lifts. Once we started talking about skin grafts for my underarms I spoke with my Internist. She suggested I should go to Mayo because of the degree of surgery I may need and the fact that it can be quite disfiguring if not done correctly.

I also have Barrett’s Esophagus, Allergic Asthma, Graves Disease, thyroiditis, diabetes (insulin only T2), chronic pain from 4 spinal fusion surgeries, and something going on that hasn’t been diagnosed as of yet. My job is my health. I never thought my life would be this way. It’s been interesting for sure. I hope this appointment goes well! I need some hope!

Oct 25, 2016 · Hidradenitis suppurativa in Skin Health

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.