I was diagnosed last week. I have been symptomatic for 10+ years (I’m 40 now) with normal blood work. I’ve been to many doctors who just shrugged their shoulders. I asked one for rheumatologist referral and showed her my pitted nails and explained my other symptoms. She said I needed derm, and I got up and walked out. I’ve been so frustrated I would give up for the better part of a year before trying again with a new doctor.
I changed medical groups recently and had a rhematologist spend nearly and hour with me, pouring over my history. The biggest hangup doctors have had is my lack of symptoms in my hands. Well, lucky me, it’s finally in my hands and those calluses on my knees are actually psoriasis. (That never occurred to me, duh.) The clincher was when the rheumatologist asked if I’ve had any skin problems and cracking in my belly button. I just got over a frustrating bout of that lovely problem. I’ve always thought I had eczema and sensitive skin.
Anyway, that’s my long-winded, but very condensed, journey to diagnosis that sounds pretty typical, sadly.
So here’s my question: what has been your experience with methotrexate? I had the option of jumping right to Humira, but I have past experience with methotrexate for an ectopic pregnancy. I just remember feeling really good after my injections, and I should have been feeling terrible because I was losing a pregnancy after fertility treatment. There’s also a concern that my insurance won’t cover Humira unless something cheaper has been tried and failed.
My second question: how bad is everyone else’s fatigue when you’re untreated? The pain sucks, but the fatigue and malaise is almost unbearable.
Thanks for listening.