- CASE FILE
I am a 32/yo F who is struggling to find relief from multiple autoimmune conditions including RA, CFS, MCAS, psoriasis, fibromyalgia.
ABOUT THIS CASE FILE
I am a 32 year old female and I have been diagnosed with Rheumatoid arthritis, MCAS (mast cell activation syndrome), chronic fatigue syndrome, fibromyalgia, secondary Raynaud's phenomenon, endometriosis, and most recently, a rare form of psoriasis called palmoplantar pustular psoriasis. All of those diagnoses are auto-immune diseases. I was diagnosed with MCAS and Rheumatoid arthritis within 7 months of each other (only because I had to wait 7 months to see a rheumatologist). My symptoms for both diseases started manifesting themselves around the same time a year earlier. I was started on oral methotrexate for my initial RA treatment. I was then changed to IM methotrexate, then Arava (leflunomide), and then Humira was added in addition to my leflunomide. I was on that combination of medications for about 2 1/2 years, with my symptoms pretty well controlled, when i started developing small pustules on my hands. It started with just a couple of pustules on each hand and got progressively worse until soon, the palms of my hands and the soles of my feet were covered in hundreds of pustules, which turned into open sores. It took seeing 6 different physicians to get a (somewhat uncertain) diagnosis of palmoplantar pustular psoriasis. My dermatologist believes this condition was caused by the Humira I was on for my RA. I've been working with my dermatologist and rheumatologist simultaneously for the past 9 months with seemingly no improvement of my symptoms. My symptoms come and go in cycles and each cycle starts over every 2 weeks like clockwork. The beginning of the cycle I see increased fatigue for several days, then I'll develop a sore throat and body aches and I'll think I'm getting a cold virus. A few days after that, small pustules will start to appear on my hands and/or feet. Within 2-3 days my hands and feet are covered with pustules. The pustules contain a clear to yellowish fluid. Sometimes the pustules burst, sometimes they dry out. Either way, they turn into open sores that crack and/or bleed. The skin around the pustules becomes dry and flaky and over several days will shed all the layers. I'll experience a few days of having "normal" looking hands before the process starts all over. This disease has also affected my fingernails and toenails. They've become soft and brittle and have formed ridges and bumps, making my nails quite unsightly. I've used every imaginable steroid and retinol cream with little relief. I've tried several oral and injectable medications including Xeljanz, IM methotrexate (again), cyclosporine, Cosentyx, Otezla, and I'm back to cyclosporine. My dermatologist has me on the maximum dose of cyclosporine that he dares to put me on, and the longer I'm on it, the less effective it is. All of the medications I've been prescribed are dangerous medications with horrible side effects. This condition has become very debilitating and I am struggling to keep up with my day-to-day life. I had to quit a job I loved and find a new job that's not as physically demanding because I couldn't keep up anymore. When my hands and feet are cracked and bleeding, the pain is pretty intense and no pain killer alleviates that type of pain. It's become hard to participate in social gatherings because I am so self-conscious of my hands and because I'm too sick and tired to go out. I'm unable to enjoy some of my favorite hobbies because using my hands is too difficult. My husband has had to become my caregiver and we've had to sacrifice so many of our opportunities and dreams because of my illness. I've become quite depressed and hopeless.