My name is Jacqueline Stevens. I am blessed to have a man in my life who is my everything. He does everything from cooking dinner and cleaning to sitting at countless doctor appointments and hospital visits with me. My best friend and partner for life. I am also lucky to have a family that stood by my side; not one of my friends did.
Hidradenitis Suppurativa (HS) is a debilitating, chronic and complex illness that has a major impact on quality of life physically, mentally, and emotionally. HS is an inflammatory skin condition consisting of extremely painful reccuring abscesses. These abscesses can develop anywhere that hair follicles are found, which is anywhere throughout the body with the exception of the palms of our hands, soles of our feet and lips. Therefore, it is possible get Hidradenitis abscesses/lesions anywhere on the body. HS may come with other symptoms such as fatigue, low grade fever, and overall malaise; this is typically during a flare. There are three Hurley stages to determine severity. Recent research strongly suggests that HS is an auto-inflammatory illness having to do with our innate immune process (auto-inflammatory process).
I started getting boils or cysts at the age of 14 all over my groin. I had many surgeries to remove each one as they popped up. They even burned one that looked like a cigar hole going deep into my skin and we couldn’t figure out why they would just come right back.
It wasn’t until the age of 21 that I finally received a diagnosis of Hidradenitis Suppurativa from a plastic surgeon I was referred to.
Over the years I’ve been told I had an STD, must not be cleaning myself right, to ewwww!!!!!
Back in the 90s the current information was not available so I dealt with the pain through high school, college, Hair School and the beginning of my career. I was very good at what I did and was blessed to be trained by, in my opinion, one of the best hairdressers in our area. I worked for him and the most high end salon in our area as a stylist. I even got to film a reality tv show for two seasons before I started getting really sick and had to quit my job. I felt sick all of the time. I’ve had pain throughout my entire life, but I just thought that was normal.
In 2001 I had wide excision of the groin on the right side. Skin from my vulva and thigh was removed and he closed me up along my panty line front to back. The wide excision gave me a nice remission...in that area.
Over the next 14 years I would get abscesses here and there on my butt or my left side. They presented as hard red lumps that constantly came and went, but the pain is indescribable.
In 2015 I got severe pneumonia and went into respiratory failure. I was in the hospital for 8 days on extremely high doses of steroids that made me gain a lot of weight, something I had never dealt with. I was a small framed and somewhat thin girl and then weighed over 200 pounds when just 1 year earlier I weighed 115 pounds. To this day I’m still told I’m obese by doctors that have never once stopped to actually hear my story. I’ve lost over 25 pounds to date, but it’s not an easy feat with HS. Heat, humidity, sweating, friction and stress are my triggers. There are more days where I can’t use one of my limbs than there are days I can. Immediately following the pneumonia and steroids my HS went absolutely bonkers. I had 10-15 egg size abscesses in my groin and between my butt cheeks that would eventually pop leaving me with open wounds everywhere. I had to sleep in diapers due to all the constant drainage and blood.
One day I got a flier in the mail telling me that there was FINALLY an FDA approved treatment for HS. I almost physically ran to my dermatologist asking if I could try this and one month later I started Humira.
Humira is a weekly injection that suppresses part of the innate immune system known to cause inflammation, it’s a biologic medication and blocks the tumor necrosis factor of the immune system. It’s important to know that Humira was NOT developed for HS. There is no cure. These meds just help with the symptoms.
I needed to find someone else who had HS and used Humira. Up to at that point I had never met another person with HS. I created a FB group called Humira & Other Biologics for HS and joined the other groups to meet people and immediately bonded with people all around the world. The group currently has 2,800 people in it and I also admin about 10 other HS groups with some really great people who just want the same thing, awareness of HS. I now have many friends, actually, an HS family is a better description.
When I began Humira it felt like it took forever for it to work; it wasn’t until 7 months on it that my open wounds began to close up. I just did OK with it because I was still getting flares daily, however, they were much smaller, had less drainage, and would usually not open. This pattern continued for 2 years then my flares went crazy again, but it had also spread to my armpits. I was going in biweekly for intralesional steroid injections into the already painful swollen skin, which helped for awhile. I switched doctors within the practice to a female dermatologist because the one I was seeing was not coming up with any new ideas. In the interim I learned that Remicade was being used as a second line off label treatment for HS. I made an appointment and asked her and she was totally down to try it. My insurance approved it and I began getting infusions in the hospital every 8 weeks, but my skin would go crazy before my next infusion. My doctor lowered my infusion schedule to 6 weeks then 4 weeks and I achieved my first HS pain free days in a very long time. The next day I got a call from the hospital that the insurance was refusing to pay for my infusion and they needed to cancel my next appointment.
My dermatologist started me immediately back on Humira because at least I was getting some relief while we appealed the Remicade decision. The appeal was denied again and we had one more chance to appeal to the insurance company after I had been on Humira for 3 months. During all of this time my armpits advanced rapidly from stage 2 to 3. We needed it to slow down while we fought the insurance, so methotrexate (chemotherapy drug that suppresses the immune system) was added to my Humira.
I called on the help of my friend, who is also a patient advocate. She suffers even worse than I do with HS so she knows the struggles. Together, we exhausted all appeals through insurance.
Denise spent an entire day on the phone with the insurance for me. We were told that we needed to do an external appeal through a government agency called IPRO. This agency can force insurance to pay if your doctor fights hard enough and your appeal is won. My doctor even spoke with Denise in order to get it all right and we WON!
Since the appeal was won I’ve had two Remicade infusions and have stayed on methotrexate while we do the loading doses of Remicade. I’m already feeling better overall. My skin will take much longer to heal, but I’m confident that our fight was worth every single day of the 9 months it took. Your treatment is worth fighting for.