I was diagnosed with RA in April 2008, after crawling on my teeth the last few weeks of calving season. I had "internet diagnosed" myself, but finally got to the doctor for verification and medication. I was told that I had RA, was prescribed MTX and given a rheumatologist's appointment two months away.
Well, I got on the phone and the computer, and refused to give up. I'm in a rural area. The largest city in the state, Billings - is 60 miles away, and is known for its excellent health care services. I tried to get an appointment at the "competing" hospital. Their first opening was in August. A few more e-mails and phone calls, and I had an appointment with the original rheumatologist the following day. I am not assertive. I have learned to be aggressive when it comes to health. I buried my husband in 2006. He had been diagnosed with pancreatic cancer four short months before. We spent those months mostly in the hospital. What struck me the hardest were people who had no one there for them. My husband always had me as his advocate. Now I am forced to be my own advocate. I hope that I will be able to keep this job description.
I continued on the MTX, with no real relief, but hair loss and acne. Nothing like pimples on top of your wrinkles.
By June, my rheumatologist started me on Remicade, but would not take me off the methotrexate, no matter how I begged.
I was able to function better after a while. I never have had any morning stiffness, but the joint pain has been ongoing. I'm also dealing with osteoarthritis; osteopenia;a bum knee; menopausal issues following a hysterectomy; and my neck and shoulders have been shot for years. In other words, I am accustomed to chronic pain. And much of my pain is not related to RA.
In September I started having allergy (hay fever) type symptoms. I took allergy medications and sinus meds with no real relief. By October, I thought that I was going to die:
http://www.karbonkountymoos.com/2008/10/11/rethinking-global-warming/
When I showed up in the ER complaining of chest pains, they moved pretty quick. Oh, I forgot to mention my history of pulmonary embolism. Oops.
But no, it was the methotrexate that cooked my lungs. No more of that stuff for me. I feel very fortunate to have the team of doctors that I have. They're great, they can't help their schedules. I've been assured (after CT scans and biopsies) that the lung damage was temporary. My mother died of interstitial lung disease, so the last thing I wanted to hear was the addition of my lungs to my list of "issues".
In February my liver enzyme numbers started rising like a bad moon. Nothing was new or different, and you know that they check those numbers all the time. When I was told that I could not have my Remicade on the day I came in for my infusion I was close to ballistic. I had been limping for two weeks, so now what do I do?
Okay, back on the dreaded pred. My mother lived on that for ten years. I know what it can do. I do not want any part of it. This has been a major bone of contention between my rheumatologist and myself. Apparently, I've never been on it long enough for it to address my symptoms. We'll see.
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