Hidradenitis suppurativa

Posted by Midnight @midnight, Sep 6, 2011

I would like to talk with anyone who has this disorder. I recently was diagnosed with this after having a cyst and uncontrolled blood sugars. Did not know I was “diabetic” until they called me back to the ER for a blood sugar of 680. Now I have horrible cysts that wont go away and are very embarrasing. Anyone out there who can help me understand and deal with this?

Liked by chloe`123, Msdodo987

@colleenyoung

Thanks for reactivating this discussion @autumnleaves. I hope @midnight @mbrittain @sandig @drew1991 @msdodo987 and the others sharing here will return to update us on how things are going.

@autumnleaves how do you explain to well-meaning friends and family that “getting out” is not what you need and that it doesn’t help?

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I try to tell them that getting out in the heat only makes the sores come more rapidly because the exposure clogs pores that I can’t reach and causes more sores. Getting out and about does help the whole depression aspect some, but what I go through to make that possible isn’t worth it. I’ve been told to go gluten free and hundreds of other things that will cure it and of course none of them work. The issue is not what I eat, or what I try to put on it or bathe in … it’s an issue of large sweat glands and clogged pores with as little as a hair that doesn’t come through the skin. No matter how many times I explain this, friends just don’t seem to get it because they don’t understand it for some reason. It’s frustrating but I’ve gotten to the point where I can’t help that they don’t understand, I just deal with it and push on.

Hi @autumnleaves,
You are absolutely right: living with a chronic skin condition like HS is not just about physical symptoms; it can have social, emotional challenges as well, You have already taken a major step by explaining your condition to your friends and family, and by communicating your reasons for being reluctant to go out.
Thank you for keeping this conversation going.

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.

@amy75

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.

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Hello @amy75,
Welcome to Connect; I’m so sorry to hear about all that you are going through. You have come to the right place, and you will see that you are not alone in your experiences.

It sounds like you’ve done all that you can to try and ease your pain, and taken the next step to see a dermatologist at Mayo Clinic. Here’s some detailed information to help you get ready for your appointment: http://mayocl.in/2dWBVsh

The drugs infliximab (Remicade) and adalimumab (Humira) do show promise in the treatment of hidradenitis suppurativa. These “biologics” are TNF inhibitors. They work by neutralizing an immune system protein known as tumor necrosis factor (TNF). Of course, your doctor will know best about the drugs’ reactions, and the link above includes these kind of questions and discussions to have with the doctor at your appointment.

@amy75, have you ever considered a surgical approach to treat HS?

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!

@amy75

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!

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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!

@amy75

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!

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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. 🙂

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.

So glad to hear this positive news, @amy75! Please keep us updated when you get time after your surgery.
Wishing you the very best,
Kanaaz

Liked by AmyEm

@alyssajean

I just recently got diagnosed with it I had to have a wick put inside the boil under my armpit

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I’m going to ask my doctor about this Methylpredsinolone dose pack and see if it is something I can use. I’m a diabetic but not on insulin yet but do take a shot to help control my blood sugar so not sure if I can take it but can’t hurt to ask. Thanks @mbrittain for talking about it. 🙂

@amy75

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.

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Hoping that you get the results you desire from the surgery and that Dr. Otley is able to give you relief. I think all of us that have HS, all we really want is relief and just not as many sores, or none at all. I’ll be watching your progress throughout your surgeries to see how it works for you and wish you the best!!! 🙂

Liked by AmyEm

Hi @amy75, @autumnleaves,

I just wanted to follow up and sincerely hope both of you are doing well? @amy75, are you done with all the surgical procedures?
I’d also like to introduce you to Connect member @arieon69, who very recently shared her experience with hidradenitis suppurativa in this discussion:
https://connect.mayoclinic.org/discussion/anal-fistula-procedures/

I’m sure you will find much strength in your shared experiences.

Hi, there. I’m sorry you have to deal with this. I am an NP and have seen lots of women with this problem. I understand that most of these women respond well to antibiotic treatment, although the cysts seem to reocurre. Sometimes surgical removal gives some relief. Other than that bit of info I don’t know any more. Good luck.

I’m so sorry your plagued with this! My daughter developed this is her late 20’s. I’m a dermatology nurse and we see it quite a lot. The answer for daughter came with the nae of a topical gel called EMUAID. It calms and soothes the skin from inflammation, pressure making you more comfortable while the boils/cysts drain. She has also been using an anti bacterial,anti fungal soaps. This medicine is homeopathic, natural ingredients. It’s also supposed to help with scarring. If you haven’t tried it, maybe you could think about seeing if it helps you. And I wish you all the best. This stuff is horrible and i know it’s painful!

Still need guidance?

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