hidradenitis suppurativa ... what works for you? (hormone, biopsy, insurance, cancer)
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I am the parent of a son in his 20s who suffers from HS. Finding a doctor has been the biggest initial problem (beyond the disease.) Most don't have a clue how to treat HS. Many just want to lance - which when a person is in pain - seems like a great plan, but it doesn't help the disease. Most also will not give long term antibiotics. We have tried a family doc, dermatologists, a surgeons with various specialties, and the ER. Obviously, I would not be posting this if it weren't a major issue faced by sufferers of HS. Anyone else have this problem? Dermatologists deal with cosmetic situations. We are dealing with a medical situation. Any suggestions?
I have had HS since I was 10, ..sick and tired of it. Had my first surgery when I was 30...am now 46...My surgeries didn't take...I had it done in my left groin twice, and a 36 stitch z-flap on my A**. Still dealing with open, draining, and or bleeding wounds...Antibiotics are no help, my only relief of pain is Hydrocodone that my surgeon has generously supplied me of. I find I feel so much better in the salt water at the beach....but hours later, the pain returns. My HS is confined to my Inner and Outer Labia, Both sides of my Groin, and my A**. It had at one point reached my inner thigh...until I slathered it with Neosporin. It shrunk from an Egg size to a grape size in 3 days. It never opened or drained...
Nothing works for me, I have had this condition for 35 years now....every once in awhile one will close up...and that is from using Prescription silver sulfadiazine cream....although it can take up to a year to close...I use it twice a day. Unlike most people a Gluten Free Diet doesn't work for me...I haven't eaten gluten in 15 years, and it has done absolutely nothing for my health or Hidradenitis except to not make my throat and tongue swell up. Things that work for some people won't work for others....it's all trial and error, that is it. I hope you find what works for you...
What is the consensus about doctors?
Would you suggest a dermatologist over a doctor or clinic that specializes in immune deficiencies?
How about experimental drugs? They scare me.
I have read everything online from the general to what part of the DNA chain this condition is from.
Everything I see is disheartening.
I am not the one who suffers. That person refuses medical care because of horrid outcomes.
I would do anything to get him to be under a doctor's care, however, he is an adult and my efforts are ignored. I guess it's sort of like AA. The patient has to seek help, not the parent of the patient.
It's very difficult.
Try Nivea for men sensitive protect. It's a new roll on anti perspiration.(White colour)I had HS for about 3 years and started to use this product and have not had a problem since.( 8 months ago)If I forget to use it I start to develop nasty lumps under my armpits however when I reapply, it is treated within 24 hours. Just thought I'd let you know what works for me.
My son has been diagnosed with HS.I know that I should be researching for cures,but at this point if I could just find something to ease the pain.He just had the 3rd surgery in which this time they removed skin from the growing area.
I have been taking Humira for 3 months now and I am feeling much better. I will keep you all updated .
A lot of people have great success with Humira. My dermatologist wanted to put me on it, but the side effects were too risky for me (2 years in remission from lymphoma means taking anything with "lymphoma" in the side effects is a no-go). Good luck with it!
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Short update
