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Does anybody have hidradenitis?

May 24, 2016 12:12 PM

Hi everyone,
Just got confirmation today that the recurrent breakouts are not MRSA, but it is called hidradenitis suppurativa. It is not a common issue, but is considered autoimmune. Of course, it's not curable at this point, and surgical care will be a mainstay of my life. Quite a interesting day today. At this point, I believe it's considered at stage 2. Will pop back on later. Just trying to kind of wrap my head around it at this point.

May 24, 2016 8:43 PM

I've never heard of this. I'll look into it later. Hugs & prayers as you come to coping terms with this new dx! 🙂💕🙏🌼

May 25, 2016 3:36 AM

I am not sure if this is what they called what I get or if it is something similar. It started when I was a teen around 14 or 15. I get the lumps in my under arms and groin sometimes under my breasts. I never have more than 10 at one time but they always come back in the same spots. I used hibiclens for years and that helped to a degree but not a whole lot. I had a few pop and leave scars, some I had to go to the doctor because they hurt so bad. They would take a needle and shoot something in it and then basically pop it and put a wick in it. They were gross and rancid. It seems like i go through spells of getting them. I remember the doctors telling me there was nothing I could do to stop getting them. I am not sure if it is a coincidence but it seems like not eating carbs especially bread made them better.

May 25, 2016 2:09 PM

Sham, that's hidradenitis. Or at least it sounds that way. Thank you.

May 25, 2016 7:05 PM

Amanda I thought it sounded similar if not same. Mine haven't flared for awhile but currently I have 5 of them. Sometimes a warm bath helps but my days of getting down in the tub are over. Well anyway at least you know you are not alone. I am sure there are others too.

May 27, 2016 4:15 PM

Sham, the only thing they can really do for me at this point is to surgically take care of them. Nothing else really works, but it's easier if we catch them when they are smaller, Otherwise, it will be a big, festering mess.

May 28, 2016 6:24 PM

Yikes amanda my heart goes out to you I know how painful the ones I had that the dr took care of were. To say it was incredibly painful doesn't begin to describe.

If you leave them alone and try to keep pressure off them does that help at all? It sounds like you have a very bad case of them. What other autoimmune issues do you have? I have hashimotos hypothyroidism and i know it causes a lot of other issues like my hives so now I am wondering if this is related to it too.

I know i am so tired of hearing from doctors that they don't understand much on autoimmune issues very frustrating for sure!!!!

May 29, 2016 9:22 AM

Sham, unfortunately not. I've been dealing with this since 2004 and I keep hoping that it will peter out eventually. I also have interstitial cystitis(which they aren't quite sure is autoimmune, haven't gotten a clear picture on that). And it's also complicated by the fact that I do have MRSA. For so long we thought this was all MRSA. It's not, so that makes me feel better in a way. And no, if I leave them alone, then I'm likely to end up with cellulitis on top of it, so have to be very vigilant when it comes to that.

May 30, 2016 1:25 AM

Have you tried hibiclens? It might help with keeping infection at bay.

May 30, 2016 7:52 AM

Sham, I've tried that. Still doing it daily and have noticed a slight decrease(meaning I recently went 2 months without having to go to the surgeon).

Jun 01, 2016 12:09 AM

Amanda that is a step in the right direction. They are miserable so hang in there.

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