Posted 5/23/2014 4:36 AM (GMT 0)
Hello everyone, I was diagnosed with RA last November. By CRP, u/s of hands, and Vectra D test which showed severe disease. I have a really rare disease called periodic paralysis and I take very large doses of potassium every day. There are lots of triggers for this disease and meds are one of them.
I have fibro, Sjogren's, and all that lovely stuff that goes with autoimmune diseases. There is very little choice in who your rheumy will be where I live, it's not a large city with lots of doctors. So I am a bit stuck here. He put me on plaquenil which promptly gave me hives. Then MXT which really made me sick and exacerbated my PP. I was up to 6 mg of folic acid a day and it didn't help. So then we went to Humira. I lost ten pounds and could barely get off my couch.
I took 4 shots of it, but just couldn't tolerate the side effects. When I told him, he said I was "causing the side effects by convincing myself I was going to have them." Well, my son and hubby both have Spondyloarthropathies and have been on Humira without problems for years, so I didn't expect anything except to feel better. Now I find I just can't go back to someone who has no patience with me and is not at all worried about showing his frustration. Meanwhile I am just feeling worse and worse.
So here are some questions I can't find answers to. I would appreciate any input. I have developed severe frequent kidney stones since my diagnosis. Does anyone else have this? I am 59 and as far as I know I didn't have them before these meds.
My white count is bouncing clear up to 21,000 and then dropping back down to normal. I have night sweats, but no fevers. I have been in the ER twice in the last month with severe abd pain and the stones.
I know RA can cause problems with your organs, but it's hard to know what, since when you surf, you can find very contradicting info. I know I should be on something for it, but I'd rather deal with the pain than the doctors I have had to deal with so far. Ugh, it is so frustrating, especially because I have an "orphan" illness no one understands at all that affects everything.
If some one can just get me to a really good link, I would appreciate it! Thanks so much...chloe