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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!
Replies to "Thank you @kanaazpereira ! I appreciate the information. I doubt I'll be eligible for the biologic..."
I really do empathize with you, @amy75, and I do look forward to what information you get at your appointment at Mayo. I was told about the surgical options as well, but my dermatologist didn't want to do the surgery because he said it opened me up to more chances of cancer. So I'm really curious to hear what Mayo tells you. Not sure I would go through with the surgery just because of how invasive it would be and like you I have diabetes, but so far haven't had to go on insulin and I'm controlled by no insulin shots. I would think that the healing process would be a consideration as well. I have PCOS (Polycystic Ovarian Disease), which I didn't know stayed with me my whole life but really made Menopause even more interesting, Degenerative Disc Disease around my L4/L5 and was told 25 years ago that it would only get worse and they were right (my back ceases up and causes me to bend over walking from one location to another or leaning over a shopping cart). I've had my HS since puberty and I'm 61 now and I can't even tell everyone the places I have sores now along with the armpits (tunnels in those), under and on my breasts, in the groin area and beyond, and any place where skin touches other skin. I'm also in the worse case scenario of HS and have been used on numerous occasions as a great example of how this disease looks, not always with my permission. I've been prodded and poked and small surgical procedures done to remove some cysts that became hard and tender and never healed but was also told they might come back. I've done shots from one dermatologist (didn't do anything) and creams and lotions and soaps galore but I have very sensitive skin so all of them made me either break out or get rashes. I've pretty much resolved myself to live with it because I'm just tired of trying "something else" only to be disappointed. So will be interested to hear what you learn at Mayo. Best wishes and you'll be in my thoughts and prayers on your appointment and the results because I understand how frustrating this disease is even on the best of days. 🙂
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My heart goes out to you, @amy75. Please keep us informed about your experience at Mayo, and what you are able to learn about surgical options.
In the meantime, if you would like to meet other members who may be able to offer their thoughts on what you are going through, other than HS, please let us know.
Good luck, and we look forward to hearing your updates!