Jan 22, 2012
Hopefully, will make the time to visit site more often now. Fog cleared shortly after meeting my new dr, a Specialist this time, a step above a GI. Drs are now coordinating txs to include Pheresis...blood washing, basically...to rid my body of antibodies/ cryobulimia situation. Who knew all these years that I could clear up those awful purple spots all over my legs, and it would have probably ELIMINATED THE ITCHING during TX? And TX would have probably been successful.
Had Transplant work up beginning of November. Drove to California and stayed for two weeks. Examined top to toe, including mammogram! Had Pheresis..6 treatments, I will have to post a photo! very cool technology, and then began actual Chemotherapy with Rituxan..off label use, to continue moving those antibodies out, is my Understanding.
RA numbers sky high, which explains the pain in my hands (Is NOT RArthritis...is vasculitis and/or Neuropathy nthat began towards the end of tx and now pretty much unbearable. Take pain meds every day, but aside from water pills to keep that tummy down ( Laxis 40 mg x twice day) and prescribed Vitamins, not taking a lot of meds. My husband takes more! Eating pretty much raw as has been USUAL for me, occasional meat, walking as much as possible. Now is the time more than ever to do Something, ANYthing to keep moving, in spite of pain. Probably repeat new txs in June, when I return to CA. I can tell when my memory starts fading. ;) Pheresis makes you sharp as a Tack. Awesome.
Enzyes higher than ever (scary, but folks have higher ...mine creeping towards 300's), platelets dropping again, Neutrophils in the tank...but spirits actually good!