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midnight

Hidradenitis suppurativa

Posted by @midnight in Skin Health, 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?

Tags: Infectious Disease, Skin Conditions

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alyssajean

Posted by @alyssajean, Dec 15, 2011

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

mbrittain

Posted by @mbrittain, Apr 24, 2012

i has my first hs cyst at 18. 6 major surgeries with recurrences at site of surgery before area even healed. finally i found an absolutely wonderful, caring pa who researched this [never before diagnosed] problem. Methylpredsinolone dose pack started at first sign of lump IMMEDIATELY resolved problem and cyst disappeared. We also tried bactrim but found no difference with abx added. also noticed through the years that cysts often followed mentsural cycles - worsening before start and lessening after period ended. But without prednisone, cysts seemed to come back worse second time. though not proven, my own personal theory is hs is affected by hormone fluctuations and stress. If you have hs, please try the methylprednisonlone dose pack. You will be AMAZED! My PA is my hero and I thank Heaven every day for her and her willingness to research my symptoms and find the closest thing to a cure there is. If you live in kansas, I would be happy to share her name even though I don't want to share her.

autumnleaves

Posted by @autumnleaves, Nov 7, 2012

I've had hidradenitis suppurativa since puberty and have suffered with it since that point in time. I didn't know what it was till about 15 years ago and immediately started getting the normal treatments for it: different soaps, creams, antibiotics, surgery, and hate to say but none of it has been very successful at all. I'm not 57, still going through menopause and suffer from PCOS as well, which makes this disease even worse. I have the tunnels in my armpits and on the back of my neck and with the last dermatologist, HIS only possible solution was to go on Accutane. But after reading how people in my age bracket with this disease respond, I prefer to stay alive and not add more health issues to my already long list.

Antibiotics have stopped helping, and I'm allergic to sulfur and sulfomides so cannot take any antibiotics that contain that and that might actually help because of my allergic reation. It is VERY humiliating and painful and I don't really get out much without paying for that trip and added sweating. Cool weather is my friend as my body just runs hot all the time and always has. I'm one of those crazy people that wears shorts all through the winter. My PA is so compassionate about my situation but has sent me on to specialists, dermatologists, and surgeons and doesn't know what else to do with me.

I find it very overwhelming some days and depressing. But most days I can get beyond it and I'm just grateful I can get around. I'm also diabetic but under control using the Byetta shot and not using insulin. It's good to know there is a place like this to come and talk about what is wrong, because most people can't even comprehend to what degree this gets and how badly you hurt and suffer in silence. Has anyone gone to an Infectious Disease man (although this isn't contagious) or a Wound Specialist to see if something can be done to give a little relief ??? Just curious.

Also I have scars and tunnels all over my body in the armpits, groin area and even private area where they cannot be bandaged; also on my neck and back and "bum" and up and down the back of my leg to the knee. Let's just say I'm covered up and some get as big as small lemons under the skin and when they break it's just outrageous finding bandages that will cover them. I only have 2 types of bandages that work okay with my skin. It's like you have one thing on top of another and another and another and everything is working against you. 🙁

sandig

Posted by @sandig, Jan 1, 2015

I started using OTC soy estrogen called Soy Care and it has helped me tremendously....other brands did not work. Hidradenitis Suppurativa support group on FB is good resource.

autumnleaves

Posted by @autumnleaves, Mon, Jan 9 at 9:02pm CST

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. 🙂

jeanneann

Posted by @jeanneann, Dec 19, 2011

I have had HS for about 12 yrs and have just undergone my 4th surgery.. Im so sorry you have this disorder. Plain and simple, it always hurts, no one seems to understand HS and everyone tells me what they think will cure me. I was small, fit, ate good and had great bills of health and still developed this. For a few years I was going to Dr to have my abscesses lanced about once a week, plus had a life supply of Keflex. I finally went under the knife for my left arm pit and both groins. It came back under my right underarm (surgery again) then came back under my left arm with revenge. I had my whole under arm removed and put on a wound vac to help heal. I thought I was done but it came back 8 yrs later on my pelvic bone area and it was surgically removed along with my groin and under my vagina. I have a hole the size of a child's football that can't be stitched up. a week after my release from hospital I was taken back with major infections and stayed there another 9 days. I am uncomfortably home, by myself and having great pity parties.
There are many websites that explain HS. Google Hidradenitis suppurativa.

sandig

Posted by @sandig, Jan 1, 2015

I started using OTC soy estrogen called Soy Care and it has helped me tremendously....other brands did not work. also a good FB support group is out there ..much helpful info from people going through the same thing. hope this helps.

just type in Hidradenitis Suppurativa support group on FB search.

autumnleaves

Posted by @autumnleaves, Jul 15, 2016

I had one really large one on the back of my neck Jeanne Ann ... and so far it hasn't come back and it was the size of a extra large egg. It kept coming back over and over and each time, it got bigger and bigger. But it was more of a cyst consistency and less like the HS breakouts I constantly have. My doctor found an ointment that helps mine heal at least and takes a bit of the pain out of it but no matter what I do, it's just painful all the time. My dermatologist wouldn't do any surgery on the HS under my arms or in my groin area because he said, it probably would come back. And removing the sweat glands opens you up to more of a chance of cancer. So, still dealing with the HS and stay in as much as possible and I agree ... it's hard not to have pity parties because folks just don't get why I can't spend time out in the heat with them and think getting out of the house will help. I can have lunch with a friend but can't do anything physical or that keeps me outside for any length of time or I'm miserable. I never realized that so many people suffer with it. And having PCOS makes it worse even in the post menopausal stage that I'm in right now. Guess the hormones being messed up is bad for us ladies in more ways than one.

andrewsta02

Posted by @andrewsta02, Dec 22, 2011

I was diagnosed in July with HS. I have been diagnosed as a diabetic for 5 years. I have tried many things in this short amount of time. My dermatologist thinks I should seek laser treatment, says my insurance will not cover it but has not given me any help in finding a place to seek this type of treatment. From all the blogs that I have read removal of the skin with skin grafts seems to be the most effective for that area but Iike what has been mentioned it most likely will come back in other areas. My HS is severe, I have it everywhere that skin touches skin and I would be happy just to have one area not in pain and deformed looking.

autumnleaves

Posted by @autumnleaves, Jul 15, 2016

Mine is severe as well .... stage 4 from what I can tell and I have them everywhere that skin touches skin so I empathize with you. It's painful and no relief. Do do skin grafts and anything like that ... it will just come back. I've had HS since puberty ... I'm 60 ... so I've had it for 45 years+ and it only gets worse as you get older. So sorry you are suffering with it as well.

jglover7

Posted by @jglover7, Jan 25, 2012

I was diagnosed with HS last year, and I have tried multiple remedies, antibiotics, and creams for relief. I only have HS in one area, and it is on my groin. It is the most painful thing that I have ever experienced and I would not wish it on my worst enemy. I have tried Keflex, Minocycline, and now they have me on Doxicycline. I also tried various vitamins, tea tree oil, hot presses, epson salt, various creams and ointments, etc. I had a follow up appointment with my dermatologist last week, and he prescribed me to a steroid cream called Vanos. We had tried steroid creams before, as I had used Halog to try to get some relief. My dermatologist said that he had never used Vanos on someone with my condition, but it was worth a shot if I was willing to try it. (of course I was.) Well, I used it for the first time last Thursday night. Of course, with something like this, it is frustrating to not see improvement immediately. But, come Sunday morning, half of my knots were flat, and I have continued to see improvement since. Here it is Wednesday afternoon, and I rode my bicycle yesterday completely pain free.:) 90% of my knots are flat, and I do not hurt at all. If you would like to try this, I will tell you what all I do on a daily basis: I take 300mg of Doxicycline (100mg 3x daily), I wash in the shower with Hibiclens Antimicrobial wash (you can get this at drug stores, it comes in an aqua colored bottle), throughout the day, I will use an antimicrobial foam soap to clean myself, it is called H2Ocean, and you can purchase it at tattoo parlors, it is generally for tattoos, but can be used for first aid purposes, and I apply the Vanos generously to the area at least 3x daily. In under a week I have had drastic improvement. Best of luck to you. I will be praying for you, as I know this is extremely difficult to deal with.

drew1991

Posted by @drew1991, Mar 12, 2012

Ive had HS for 6years now ive finally got some control over this ive learned for me its about the soap I use hibiclens can be bout at any pharmacy two shower a day laundry soap uncented avoid stress at all cost and avoid hot weather for an extended amount of time for me sweating also starts my flare ups, if ur getting them in ur waist line or igroin inside of ur legs try not to wear tight pants ive also realized dairy products not a good idea its truely amazing the wide range of things that can trigger this I dont kno if this will help you but it works for me ull eventually find somthing that will work for you

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drew1991

Posted by @drew1991, Mar 12, 2012

Dont bother with atibiotics jus a waist of money they dont work an never will sorry for the mis spelling ^

msdodo987

Posted by @msdodo987, Nov 15, 2012

I was finally diagnosed with HS last month when I went to the hospital. I was given Keflex and Bactrim, which I took for ten days. It was getting better until I stopped taking them. Now it's getting back to the way it was before I even started the meds.

colleenyoung

Posted by @colleenyoung, Jul 15, 2016

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?

autumnleaves

Posted by @autumnleaves, Jul 15, 2016

Those that are close to me, friendship wise, know about the disease but still think that "depression wise", getting me out is the solution and don't stop to realize that in the heat, it's a sentence for more sores. But I think it's more that they are just trying to help and don't know how. When I do turn them down, I talk about how that will affect me, unfortunately, but that I appreciate their concern. My family completely understands and doesn't put me in that spot. In fact if they think it will be the slightest warm, they are looking for solutions to the situation. I'm blessed!!

autumnleaves

Posted by @autumnleaves, Oct 16, 2016

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.

kanaazpereira

Posted by @kanaazpereira, Oct 17, 2016

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.

amy75

Posted by @amy75, Oct 25, 2016

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.

kanaazpereira

Posted by @kanaazpereira, Oct 26, 2016

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?

amy75

Posted by @amy75, Oct 26, 2016

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!

kanaazpereira

Posted by @kanaazpereira, Oct 26, 2016

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!

autumnleaves

Posted by @autumnleaves, Oct 27, 2016

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. 🙂

amy75

Posted by @amy75, Mon, Jan 9 at 2:21pm CST

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.

autumnleaves

Posted by @autumnleaves, Mon, Jan 9 at 9:08pm CST

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!!! 🙂

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kanaazpereira

Posted by @kanaazpereira, Mon, Jan 9 at 8:36pm CST

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

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