Wellness

[nana59]

anyone suffer from this condition....i'm at my wit's end.....

[sidsmom]

I can’t post links, but go to Nutrition Facts & search for

’Hidradenitis’...and these 2 videos, with references, might help.

🌼💛

Here are the YouTube videos:

https://youtu.be/mmRImxA31MM

https://youtu.be/eUnJIij0sKM

[PickyPicky3]

Wow, never thought I'd see this topic here.I am 71, diagnosed at 66. It took 5 doctors to get the diagnosis right. That doctor refused to talk to me about it!! Sent me home to Google it. I still can't believe that one.

The only way I found competent help was to call the closest medical school department of dermatology and ask if anyone there knew anything about hidradenitis suppurativa. They referred me to a practice that was doing research on the disease.

It remains still cause unknown and no cure, but in 2018 doctors are starting to learn about it. It advances slower in older people than younger. There are treatments that help but do not cure.

Don't waste your time with a doctor who has never treated an HS patient. Better to drive 10 hours every three months than be someone's guinea pig. Good luck to you.....

[I am still oxox]

I  have suffered since my early 20's my, underarms look like road maps for all of the excisions of have had done.

I had the sweat glands removed in my left axilla, and my right flares up occasionally my dermatologist gives me a shot of kenalog that clears it right up

[shaggygirl]

Odd that I should be reading this now at 3:45 in the morning. A sleepless night since about 2:00am and just got up to peruse the web as a story is being told right now on Dr. Pimple Popper (yes that's the name of the show) and one of her patients has come to see her to see if she could be of any help for this condition. It was sad when they showed her open running boils. I had a dear friend who suffered terribly from it especially under her arms and her private areas. She has since passed away, but nothing whatsoever to do with her hidradinitis. I can't even tell you how much I wish for you that a cure could be found.

[egeria]

I’ve had Hidradenitis Suppurativa for years but didn’t know what it was until my derm diagnosed it 2 years ago. The one she saw was under my left breast (for the first time) but  I used to get them regularly in my private areas. She told me to use an acne wash after using whatever other shower soap of choice. That seems to have worked as I haven’t had a flare-up in a couple of years.

Also, she said if I continued to get them, she could prescribe Humira, which I would have to self inject. Let me end by saying I’m happy not to have to go that route.

[HisElk1]

@nana59, I recall you posting about this several months ago and I shared my experience.

I was around 28 years old when I was first diagnosed and have not just turned 60.  I saw a dermatologist who gave me cortisone injections in each one and said I'd have to come back every few months.  

I got a 2nd opinion from a plastic surgeon.  Upon my exam,  he knew exactly what I had and said surgery was an option.  Given both of my underarms were severely affected, I had the surgery and my sweat glands were removed.  Yes, it was a pain in the butt, particularly when I had to use my arms to do "certain' things and washing my hair, etc. was difficult.  He also mentioned that there was a chance I might get a few in other places which I did, but not to the extent that my underarms did and they eventually went away.

If I had it to do over again, I would have the surgery to have the glands removed.  Knock on wood, I've been ok in both of those areas.

[novamc1]

@nana59

So sorry to learn about a new malady that I have never heard of.  Hope you can get a grip on it and not suffer so much.

I looked it up from a premier source of medical research.. Maybe you'll see something new that might increase understanding of the problem and maybe help you reach  a solution.

https://ghr.nlm.nih.gov/condition/hidradenitis-suppurativa#genes

[Nonametoday]

I have had it since I was a youngster.  There is no cure but I do stay on maintenance antibiotics to prevent the very angry and painful form.  I have lots of scarring and have had many incisions and drainages.  

Back when I was young, doctors would tell you that it was because you were nasty that you had it.  I scrubbed my skin and stayed out of the sun to prevent sweating because I had come to realize that heat and sweating made it worse ,and scrubbed and stayed out of the sun until I was white as a ghost and still had it.  It began about the time of my menses which, unfortunately for me, was about 10-11 years old.

Also, the scrubbing and heat from the sanitary napkins only increased it.  I look back on those days and wonder how I ever stayed in school long enough to get my picture in the yearbook but I did and I graduated and I rarely missed a day.

Mine were mostly in the other places although I did have a few underarms.  I took Acutane for a very long time which helped considerably but then I developed liver issues, so had to stop that and now I take antibiotics maintenance.  

[novamc1]

This link might interest some who want to know more about results of studies on this illness.  Also, it might provide info about federally-funded clinical trials that some patients might be able to enroll in.

https://clinicaltrials.gov/ct2/results?cond=%22hidradenitis+suppurativa%22+OR+%22acne+inversa%22