[Lbrown]

Hello,

In Feb I had IVIG treatment, 2 mg/kg over 2 days. I developed the worst headache of my life, and ended up sick as a dog. I tried everything I could think of for the headache - tylenol, tylenol sinus, tylenol 1, robaxacet, advil, benadryl and gravol in various combinations. The robaxacet, benadryl and gravol was to knock myself out so I could sleep. I also made sure to drink at least a couple big glasses of water a day and I was snacking on salt & vinegar chips and salty stuff. Ended up with a HGB of 59, throwing up with a low sodium count and high creatinine. They also said I was dehydrated but I'm not sure how, I only threw up a few times and not much. Took 2 transfusions to get me feeling better.

I am back to transfusions every 2 weeks and feeling a lot better. Saw my GP who is sending me to an immunologist for a 2nd opinion, but that will take a couple of months.

Meanwhile, I managed to get a 2nd BMB done on Friday. I had the hematologist captive so I managed to ask a lot of questions. They do test for PNH - she said that is so rare there might be 1 case in our city, but everyone is trying to find PNH. They do stains on the tissue and they do genetic testing. My previous BMB was in Dec 2008 and they couldn't get any aspirate. This time, they had to try twice but they finally got a good tissue sample and aspirate. Last time I had normal cellularity but with hardly any red cell precursors and lots of T cells. I think the genetic testing determines what type of T cell, but they didn't get a good read on that last time, hopefully they will this time. She says she thinks they are Th1 cells, and that they are also affecting my white cells.

My next treatment will be a combination of prednisone and cytoxan. The pred is at 40 mg a day for a month, with 100 mg cytoxan for up to a year. I did some research and apparently that combination has an average remission of 5 years for PRCA. I'm not too happy about going on prednisone, but I need to do something.

I am still convinced that my disease has an infectious cause.

I also just started exjade. Wow is it ever expensive.

Deb