Hi....I'm Cindy and I was diagnosed last fall with PRA, Palindromic Rheumatoid Arthritis. My Rheumatoid Factor and Anti-CCP were both "wildly positive", but rheumy feels I have PRA as my symptoms bounce around.
I'm 54 and live alone with my 2 dogs. I have 2 adult children who live fairly close, but both are on their own now (yay!). It's been a little scary thinking about having this disease and living alone, but so far so good.
I'd had symptoms for over a year (2 yrs?) before I saw a doc about it....first didn't have a primary care doc, then had to wait for him to see my flares, then had to wait for the doc. I was lucky in that I was diagnosed as soon as I saw the rheumy. He listened to me describe what I'd been thru and gave me the diagnosis. I'd never heard of such a disease, so of course went home and started researching. When first diagnosed I had 1 toe joint that was frozen and now I have a finger joint that is very inflammed and has been for over 2 months...not sure if there's any damage, but it certainly doesn't look normal....I can't afford XRays to have it checked. Other than that my pain moves around, but isn't the "normal" PRA pain in that mine lasts way longer than a few hours or days. At one point my shoulders were bad for almost a year.
When I first saw the rheumy I told him I would rather take the least upsetting meds available. I have lifelong GI problems and really didn't want to take anything that would cause problems in that area. He gave me diclofenac for pain and gave me a list of meds that would be available if/when I decided I needed something. At that time I was in a fairly quiet period, so chose to not start on anything right away.
After a few months I went back and doc gave me plaquenil.....one dose caused vomiting, so I never took a second one. Several month later, when my symptoms were getting bad I went back and was given Doxycycline. That was in January and I've not had any real problems with it.....initially had some lower GI upset, but that was handled with probiotics. After a few months my stomach/esophagus issues came back and had to stop the doxy until I was scoped to make sure it wasn't a side effect of the doxy....it wasn't and I've been back on it since the beginning of August with no problems tolerating.
Right now, at this moment, both feet hurt when I walk and my 1 finger joint is giving me grief. Other than that, I've been doing great. Back in March I went on a burst and taper of prednisone as my symptoms were totally out of control. That seemed to break the cycle and I actually had a couple of months that were relatively pain free. When the pain did come back it wasn't as severe. Doc says it's too soon to say if it's the doxy that has made a difference, so I'll continue it at least until the end of the year.
My background is medicine....I've been a RN for over 30 years but I currently work with computers. I've been following a low carb diet for the past few years and have made a hobby out of reading research and articles related to diet, heart disease, diabetes and glucose metabolism problems. I do not follow the "common wisdom" on many of these problems....partly because of my initial education and partly because of what I've read. Both my primary doc and my rheumy encourage me to do whatever research I need and have both given me links to articles and studies. (I've had docs in the past that didn't want to be questioned, and searched for a long time to find my primary doc)
Anyway....glad to have found this site. I'm on a couple of others, as well as a couple of forums for other problems.
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