Brian (Tampa, Florida) on 03/27/2008
Ive been reading all the wonderful remedies and suggestions here on your site when i came across a section dedicated to HIDRADENITIS SUPPURTIVA and I just had to share my story as well.
I have a congenital birth defect that caused me to be born missing my left foot, I received my prosthesis by my first b-day. I grew up with NO problems with my leg what so ever and never considered myself to have any limitations. That is until i was in my very early 20's and began getting (what i thought at the time were) cists on my stump. This issue became worse and worse with each passing year and after doctors Lansing two or three of them I couldn't handle the recovery of each one anymore so I started dealing with them myself as they would appear. Nothing I did would work other then forcing my leg on, no matter how swollen I was and forcing them to break so that the horrible pain would go away. You see as anyone with HIDRADENITIS SUPPURTIVA knows the pain is unbearable so imagine having to walk on it. Most people who have HIDRADENITIS SUPPURTIVA suffer these sores in their armpits, groin, and under their breasts. I had never had any sores in any of those places. Only on my leg. Then as my leg got worse I began to get them under my arms as well.
After suffering through the pain for a few years I finally realized this issue I was having was way bigger then I could handle myself and truly feared doing more damage to my leg so I finally began seeing doctors to get answers. Honestly, this was a total waist of my time and my money!! I went to over 10 doctors, 5 dermatologists and NONE of them had any idea what was causing my sores. After being told that I would have to have the remainder of my leg removed, told that it was my hygiene problem and that I wasn't bathing properly, being told to stop wearing any prosthetics and be bound to a wheel chair for the rest of my life & even being told that I was too vain and needed to get over myself and realize that there was no need to wear a prosthetic I finally gave up on doctors once again and went back to dealing with the pain myself.
At that point in my life I was getting anywhere for 4 - 5 sores on my leg per week and had lost two jobs due to the inability to wear my prosthesis. I was just about ready to give into the doctor (dermatologist) who wanted me to have my leg amputated when I met a friend of a friend who asked me what was wrong with my leg that I wasn't able to put it on. After talking to her for only a few minutes and her begging me to see my sores she shockingly lifted her shirt and showed me the scars under her arms and explained HIDRADENITIS SUPPURTIVA to me. She had been diagnosed 5 years before after having two surgeries to remove her sweat glands.
I literally began to cry!! Finally I knew what was wrong with me....after 10 doctors and 5 dermatologists there was someone who knew what the hell it was. WOW! The next day I made an appointment at the dermatologists who wanted me to have my leg amputated and told him of HIDRADENITIS SUPPURTIVA. He and 4 other dermatologists after him had never heard of it and didn't have any answers as to how to treat this condition. Finally I found this amazing dermatologists who did know and I am now happy to say that 6 years later I have only had 2 sores and those failed in comparison to the size or pain of those in the past. The only remedy I have used in the past 6 years is ANTIBACTERIAL SOAP!!! Not the liquid or body washes the only one that works is the good ole fashion antibacterial bar soap. It is truly a miracle worker where my sores are concerned and I swear by it. I have even gone on vacations and didn't have ___ soap and immediately after only one day of not showering using ____ I have gotten a sore.
I hope in some small way this story helps someone else out there cause I know how hard it was going through day by day in pain and no one having the answers to help!! Good Luck!!
Replied By Sara (Corpus Christi, Texas) on 07/28/2008
Replied By Zulfikar Panjwani (Atlanta, Georgia) on 12/15/2008
...Just 2 capsules 2 times a day for a months and then 2 just before you sleep. Hope this helps.
Replied By Laddeeraven (N Billerica, Ma) on 12/23/2011
I had lovely skin until I turned 20. I had terrible acne on my face and back. A year or so later the HS started. It wasn't bad in the beginning, but that changed fast. As long as they drained I was ok it was when the scare tissue was too tough for them o break thru that I had to make trips to the ER to have them lanced and wicked. I'm 55 and overweight (lost 72 pounds in the past year) and they are worse then ever. My arm pits are not too bad but my groin area is a nightmare.
As a result of an infected cyst in my 20's I was hospitalized with a whopping 106.5 temp. While in an ice bath they started IV penicillin, which I had orally without incident so it came as a big surprise when I had renal shut down.
My kidney function did return but my doctor dropped the ball and in 2002 when I got cellulitis for the fifth or with time from the HS it was found that my kidney function was only 40%. So much for my doc keeping an eye on things.
Now it seems my kidneys are not sending the hormone to my bone marrow telling it to make red blood cells. The HS causes and abundance of white blood cells. I am so anemic it has become dangerous.
My cysts generally leak a clear fluid or bleed copious amount of bright red blood. It's a nightmare going anyplace. Hard chairs hurt, I leave stains, I can't wear anything but black and it's pretty impossible to bandage he to the location.
I have been to some of he best dermatologists in Boston but nada! I find I do better hen the doctors treating it. Awhile back they injected the worst ones with a steroid and or a few days I was in heaven. They were nearly nonexistent but then came back with a vengeance. I was talked into trying it 2 more times and it was the biggest mistake of my life. Everyone injected is so much worse that I long for the days before they experimented on me. I've done Embrel (sp?) some IV thing for RA that gave me a bizarre side effect. Every joint felt like it had gout.
So if we don't get the blood thing under control HS may be the cause of my demise. It's such a horrible disease that's so hard to explain to anyone that doesn't have it or love someone that does.
I'm open to suggestions.
Replied By Debbie (Melbourne, Australia ) on 12/23/2011
Replied By Paulette (Rockton, Il) on 02/02/2012
Brian, I am amazed at your courage. My prayers are with you. We have family in Tampa, maybe someday we will meet you.
Paulette