VERA
For several years before January 2012, I experienced the break out of a red rash on my legs and arms. Doctors never knew what it was and gave me Prednisone and it would go away. However, in January of 2012, I developed Pneumonia and was hospitalized. The bad thing about that is that I have a paralyzed diaphragm in my right lung and the Pneumonia was in the left lung. I really thought I was dying. I had been in the care of the Lung Doctor at that time. I again had the red rash and they put me on Prednisone. This time it did no good. While in the hospital, I could not walk or talk. And, while in there I developed kidney problems. They put a Urologist on my case and he ordered a kidney biopsy and put me back on 60 mg of Prednisone. The hospital was not sure of what they found and they sent my biopsy to Mayo Clinic. Mayo diagnosed the biopsy as Cryoglobulinemia Vasculitis. I could not even say the word. They did several more tests, and as usual every day of my 18 day hospital stay.
The Urologist scheduled me for Plasma Exchange, also called plasmapheresis. I had 6 treatments of pheresis. Plasmapheresis removed the plasma where the badly behaving protein (cryoglobulins) that live in my blood. I also had 3 blood transfusions during my stay. They gave me physical therapy to help me start to walk again. I came home after 18 days and used a walker for several months. I am walking now, but can’t walk very far at one time. I still have a slight speech problem in that I stutter some. I have been put on Rituxan and have 2 treatments, one week apart every 6 months. I had my last 2 treatments at the end of September and first of October. The next one will be in April. I believe the Rituxan is keeping the Cryoglobulinemia Vasculitis under pretty good control. I also take Imuran, an immune suppressing drug. I need to be careful about being around people that are coughing and sniffling because I am immune compromised.
I went to Cleveland Clinic in July 2012 where they ran several tests. The team of doctors included a Rheumatologist, Urologist, and Lung Doctor. The team concluded that my care at the other hospital was good. Those doctors had done everything that they would or could have done. Cleveland clinic said my kidneys were clear and working well. Recently, I had severe pain in my right hand and now my middle finger will not straighten. I believe that is
the Rheumatoid Arthritis acting up.
