Have Your Say

Every month we will be featuring a story based on the views and experiences of a HS sufferer. If you would like to tell the world how HS has affected your life, then send us your story to mystory@ba-hs.org.uk. Stories from previous months can be viewed using the links below this months story. (Unfortunetly we cannot guarantee that every story will be published. Stories will be published as received.)

This Month - Lisa tells of her experiences with HS.

My name is Lisa and this is my story of living with HS. When I was around 30, I began to develop tiny pimple-like abrasions on my skin. They would get larger from time to time, burst and recede.

There were times when I would have to have them drained, but my surgeon had no idea why I had them or where they were coming from. I eventually made my way to a dermatologist. He diagnosed the condition and put me on spirnolactin. This did little to improve things. I turned to another dermatologist who prescribed dapsone and cortisone creams. These helped for awhile, but there was no lasting relief. Over time, the condition became worse. I sought help from a doctor who treated people with severe burns. He talked about surgical procedures he could perform, but asked me to try one more dermatologist.

For over a year, at 3 week intervals, I endured injections directly into the hs cysts. My nurse eventually told me I was one of the bravest patients she had treated. She said most people cried with one injection and I was able to withstand up to 15 without saying a word. The injections worked for a time, but once again my condition worsened. The day I went to ask for a change in treatment, my nurse received an email about a drug cocktail that may lead to possible remission in hs sufferers. It is early in my treatment, but six weeks later, things have improved so greatly, I am astounded.

I take Rifampin, Flagyl and Cipro together. Rifampin 300 mg twice daily, Cipro 500 mg twice daily and Flagyl 500 mg twice daily. I've been using them for 6 weeks. The plan is to keep me on them for a year. At this point, I have no open wounds, no oozing, no odor. I feel normal again for the first time in years. There are a few side effects, tendon pain and stomach upset, but I use ibuprofen and Align and the side effects aren't so bad. I'm praying these drugs work a miracle in my life and I do go into remission.

Anyone reading this, I urge you to go to your doctor and ask about the study and these medications. They have given me hope and a long overdue feeling of normality.

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