3 ms·
Mine started when I was 28, at the inside my left eyebrow, then my left eyelid. Then also my scrotum and then my scalp. STD tests negative. Dermatologist sa
by throwaway83434 10y ago
Mine started when I was 28, at the inside my left eyebrow, then my left eyelid. Then also my scrotum and then my scalp. STD tests negative. Dermatologist said "seborrheic dermatitis" and gave me a shampoo. Spreading to my elbows and knees it finally presented, and was diagnosed, like classic psoriasis.
Lulls and flares. Topical medicine was like a treadmill, barely containing what I had and not preventing any new areas. Then mild fatigue began with the flares. Hard to get up some days. Reminded me of the major depression I had conquered in a previous life. Blood tests were fine.
Then knee pain. "Just arthritis - you're 31 but getting older." Get some orthotics, do some PT. Tailbone pain. Fingers too stiff to get dressed. How much Naproxin can I take safely? Orthopedists just thinking of ways to treat pain - killing nerves or opioids. The cyclic nature makes it so that just as it's getting unbearable, or when I can finally see a new doctor, everything is pretty much fine.
A new dermatologist finally suggests I see a rheumatologist that it could be PA. Looked for the best in my region, did a lot of tests and at least I finally had a name for this. Psoriatic Arthritis. Took Otezla which helped my joint pain, gave me a lot of migraines, and seemed to be a multiplier for the topical medication, but after 9 months it was not keeping up with the flares.
Now I'm taking Humera injections instead for the last 3 months. My skin is almost clear and I haven't had any flare ups. The potential side effects are scary. Hoping to become more informed and find some alternatives to move to. For the first time in 8 years I feel almost normal, but my hunt is not over. Right now I've made a deal with the devil for some normalcy - I believe a lifetime of this medicine could kill me. It would also cost $33,000 a year without my great job and insurance.
The article's point that an umbrella autoimmune specialist is needed is so true. For me the closest I came was my rheumatologist - she knew more about psoriasis than any of the dermatologists I've been to.
Good luck on your journey.