Thank you for sharing! Eleven years ago I woke to horrendous pain. Went to ER and my ESR &CRP were sky high. Put on 40mg prednisone and saw a rhyme dr the next day and up’d me to 60mg. Of course they tittered me down and added pain pills. Six months later U had to compression fractures back and pelvis. Three rhymes later I asked is it possible that I could have SERO NEGATINE RA? The dr says I was just going to talk with you about this, right!?! So now I’m on my 5th Rhuem and went on Remicade infusions. This worked well. Now I also had what was thought to be a bad case of Raynauds. Then the dr changed me to Rituxan Infusion as she thought I had CAD ( Cold agglutinate Disorder). Rituxan is the protocol for that. My research told me I don’t have all the factors for that. With my good insurance I was able to self refer to a Hematologist. After thousands of dollars & tons of tests, I now have type 1 Cryoglobulinemia. Treatment is the same- Rituxan.
What I have learned and My long point is….do your own research, question everything and be your own body’s own advocate!

Jump to this post