Let's see...where to begin here?
I was frequently on this site about 2 years ago after initial diagnosis looking for answers and support. They diagnosed me as UCTD, put me on prednisone and plaquenil and it seemed I was on this holding pattern of trying to balance out my joint pain and severe fatigue while attempting to phase out the prednisone and maintain normalcy on the plaquenil. I moved back home from Colorado after being a single mom there while sick for 2 years and now I'm back home with my family. It's been nice to be back at home with a support system.
When I moved here, I met with a new rheumy who was miserable. She downplayed everything saying my persistent symptoms were simply because I was overweight (which yeah, I gained weight after a year and a half on prednisone, who wouldn't?), upped my dose of plaquenil, and said simply I was going to have to deal with the joint pain since it wasn't life threatening. She would see me in a year unless something life-threatening occurred. Two days later, her nurse called telling me I had protein in my urine and the test simply needed to be retaken in 3 months. I walked out of there and never looked back!
Well, needless to say, this interaction really upset me. I took myself off the Plaquenil and the Prednisone telling myself, maybe this diagnosis was all a mistake. Maybe I could make myself better simply with healthy eating, vitamins, exercise, etc. Since this decision a year ago, I suffered a leg fracture with unknown cause while training for a half-marathon, and gradually increased severe pain in ALL my joints- elbows, fingers, ankles, knees, hips...and the fatigue is starting to come back.
My primary care doctor a month ago scolded me for my decision, which I completely deserved and set me up with a new rheumy. I saw her last week and had labwork completed. I really liked her. She called me the next day with abnormal lab values.
Vitamin D decreased
C reactive protein elevated
Sed rate elevated
I'm aware of the importance of the sed rate and vitamin d levels. Anyone have any personal experience with an aldolase level? Anyone else have a really elevated C reactive protein?
I'm really hoping this new rheumy will have me figured out. She wants to recheck me in 8 weeks after I keep up with my medications (minus the plaquenil and no prednisone) since I was having issues remembering to take everything.
I hope everyone's doing ok!
Diagnoses- Hypothyroidism 2010, UCTD 2009, PCOS 2008, asthma 2001, IBS 2010
Daily Meds- Vitamin D, Synthroid, Vitamin B12, LoEstrin, numerous vitamin supplements