Hello everyone, me again with an update that I hope helps others.
Well, not to rehash but quick recap...3 yrs ago with painful, stiff, and inflamed joints..Stiff in am for approx 3-4 hrs, pain always...Ra and ana neg then but parvo virus...Gp said may last a few yrs and when I flared gave me 20-40 mg boost of 3-5 days prednisone and ultram 50 mg...Well about 2 weeks ago, 5 days after I saw immunologist/internal dr I had worst flare ever and included knees, ankles, and wrists...Went to gp in ky (we moved from az in 08/05 and first flare here) he said parvovirus can do this for up to 10 years gave me 60 mg prednisone tid, 40 mg tid, 20 mg tid, 15 mg injection of decadron (steroid) and 50 mg every 4 hrs ultram said come back if no help...Well day 5 and I could hardly move the 1st 3 hours of the day and pain at 7/10, I went back. He did xrays and called me to his office to look at them...Moderate to severe joint damage with bone loss/changes in hands, wrists, and knees. He told me then ra as I already fit 5 of 7 criteria, need 4 for a diagnosis. He then did full arthritis bloodwork and said he would put me on other ra meds when bloodwork back in 1 week. So, I go in today and he is stumped, blood work looks great...Borderline ra factor, ana neg, sed rate 1 with high wbc counts...He said not ra as ra neg, then I reminded him he drew blood after tx of decadron and prednisone...He said ok, other than ra and ana bloodwork no good. When I went back the previous week he put me on relafan 2000 mg daily and upped the ultram to 100 mg every 4 hours prn, he said I could stop all meds and have blood work repeated, but that he would just tx me for flares with whatever I wanted...I asked him about xrays and he had no answer for me. Gave me a 6 mnth script of relafan and said if flares get worse or meds quit working to come back and he will give me whatever I want. I dont think so...I want to stop this disease from eating my bones and joints, not just make the pain and inflammation go away, I am only 33...Well I guess I will hold out for immunologist appt at uk next week, his wife is a rheumy and I think I will make an appointment for her. I thought I finally had answer, others encourage me to see rheumy as many ra sufferes are never ra and some people with no disease process are ra ...Any suggestions out there?? Sorry so lengthy! Thanks for listening to me rant and rave...So dang frustrating!!