For me getting to the answer of Rheumatoid Arthritis was spotty, then a fast rush to the answer. I have had intermittent joint problems and have had autoimmune disease. My first is asthma. My second is bouts of GI problems that I attribute to autoimmune disease of a unnamed origin. Lastly, I have eczema, and have had it since childhood. Newly, I have pernicious anemia and take B-12 shots for the REST of MY LIFE (that was a new diagnosis last summer). My IgE when I had my last bad sickness with asthma was over 1,000. Ugly.
I first started having joint problems with my shoulder, hip, knee, jaw and ankle and heel several years ago. I went to a Rheumatologist who came up with Ankylosing Spondilosis. I did not have back problems (and therefore had my doubts about the diagnosis), so when the Rheumy came up with a well intended capsasin cream that caused my body to be red all over and in extreme pain. I gave up with her. I'm sure she gave up with me.
A few years went by and nothing really bad or miserable happened. Suddenly this last December I started to have hand pain so extreme that I couldn't even use a computer for longer than 3 minutes, couldn't hold a book, limped for the knee pain, my shoulders ached and my hips, and wrists ached so bad I couldn't sleep, my General Practitioner sent me to a new Rheumatologist (in the same practice). He did blood work (which ended up being seronegative, high sed rate, high C-reactive protein), a good work up with x-rays, and said he would help me. I went on prednisone, Arava and pain meds and hoped it would all go away. The Arava gave me horrible gas and stomach upset (no surprise, due to my long term stomach issues). I got cortisone shots in my hand (he called it trigger finger) due to my wrist being swollen and compressing my nerves. After a while he tried to taper my prednisone and my arthritis came back just as hard. He started me on methotrexate in which I injected in my abdomen (I couldn't take it orally as the Arava upset my stomach).
Then, I asked for PT/OT, I wanted tips on how to protect my joints, keep working and do my activities of daily living. I was swimming in a aerobics class but the whisking of my wrists just irritated them more. So I stopped. The PT/OT Hand Specialist was clueless. She didn't see any horrible deformity so, she didn't know what to help me with. I told her I wanted tips on how to keep pain at bay when I performed my activities of daily living. The next appointment she had forgot to look up info to help me (on the Internet no less, I could have done this myself). That was my last appointment. Later, I was referred to another OT gal who was a godsend. Absolutely fantabulous. The best.
Then after hobbling along one extreme night at work, my wrist and ankle and knee doing a number, my Rheumy gave me multiple cortisone shots. He said he never gave anyone so many shots at one time. I was crying and trying to be brave on the exam table while he gave them. I took that night off of work. Some co-workers suggest that I get on FMLA like, NOW. So, clueless, goofy me started the paperwork. Protect the job! Sigh.
Then the Rheumy started me on Enbrel Sure-Click. A biologic. And another round of shots! Yea! Oh, that one hurt and I had to psych myself up for that one. Ugg. I was going along with things OK for awhile until my other hand started to have symptoms and elbows and hips. It started to become uncomfortable to sleep again. Then the Enbrel started to give me itchy site reactions worse each time, each week on each rotated-pin cushioned - bruised thigh. When the itchy red welt got as big as my hand (I have big hands) on my right thigh, I called the office again. They had me come in. Gee, this is ugly I said, aren't I supposed to get better, not worse by now? My rheumy assured me he had never NOT figured out a patient in all his years. That I was welcome to get a second opinion. That he was going to start me on another kind of biologic. Remicade. The insurance wanted to see that I failed 2 meds in the same class before starting on another. Remicade is infused, thru an IV in the outpatient hospital. For, like, REALLY A LOT of money. Hi-ya, gasp, gag and all that good stuff. I was to stop my Enbrel (which was due that day) and I could burst on prednisone 20-20-10-10- back to the 5 mg I was on. I told him I hated that stuff. I couldn't think at work on it. He ordered it anyway if I changed my mind.
Well, I have had my scary infusion (I'll tell you why on another blog). And now I pop my regular Ultram to keep the horrible flare at bay. Everything is hurting like a mother. And I'm waiting for the new biologic to start working. I could take the prednisone, but how will I know when the biologic works? I keep moving my hands. But boy it hurts. Much like broken bones healing hurts. Or if you have bruises over the joints. I wait. I hope. I distract myself. I try not to whine. I wait. I hope. I distract myself...
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