Amy

Like so many HS Warriors my story is one of severe pain, lots of questions with little to no answers, confusion and frustration but its also one of hope thankfulness and determination.  I have had HS for as long as I can remember but of course for years it went undiagnosed. It was called everything from cyst acne to fat pockets haha. After years of trying every antibiotics and home remedies I could find about it my cousin who worked at a fabulous dermatologist office called me up and said I think I know what you have come into the office. I could not get there fast enough. They had another patient that was recently diagnosed with HS and came to get prescribed Humira. After a few weeks of getting insurance approval my first prescription of Humira arrived. It was a miracle drug for me. Within weeks I felt amazing and my skin started clearing up. Within 6 months other than an occasional flare up and a few big ones that had to be surgery removed I went from a borderline Stage 2/3 to Stage 1 almost remission. I couldn't of been happier after years of feel horrible I finally felt normal again. This went on for 5 years until July 2019. One day I felt like I was getting a bladder infection no big deal right?! I go to the store get some cranberry juice Ill be fine. 2 days later I feel like death. I'm running a fever had the chills. Finally I couldn't take it anymore and asked my boyfriend to take me to the ER. After a quick look at me and a pee test they come back that my bladder infection went septic. I was admitted into the hospital were I spent 6 days because my body couldn't fight it. Finally I get better but my doctors decided my immune system wasn't strong enough for Humira. I did have a total of 4 infection in my 5 years of being Humira. I was devastated. Why is this happening to me? Don't I have a choice? If i did i would go back on Humira today but I didn't. By Jan 2020 my almost remission HS came back with a vengeance. I was miserable I had forgotten how painful and exhausting this disease is. It was effecting every aspect of my life. I couldn't put my arms down couldn't even sit. I probably had 30-40 absences all over my body and the worst part was all i wanted to do was sleep for days. I am a workaholic and I couldn't even get enough energy to do that. My dermatologist was at a lose. Humira is the only med on the market she sent me to a teaching hospital to see if they had any thoughts. They suggested spironolactone and metformin. She prescription the spironolactone but a general physician had to give me the metformin because its not a normal dermatologist medicine. I went to my general and he refused to prescribed it for me. Even with the dermatologist phone calls. I literally broke down in the middle of my appointment. I was in so much pain and it was ruining my life, my job  my everything. He told my maybe I needed to go see a psychologist because it was all in my head. I left the office feeling so lost and alone. The next day I was venting to a friend who said I should get a second opinion and she had the perfect doctor. I called and got in the next day. They suggested a clinical trail for a new medicine Avocopan specifically designed for HS. I was quickly approved for the trail and today I am 10 months in. I am feeling much better and am starting to get my life back. It is a close 2nd to Humira for me at least but more importantly it opened my eyes to a whole group of Doctors who care about us and are determined to find a medicine to help this awful disease. Today I am HS Warriors Strong!