Re: cyclosporin A + Rituxan for AIHA - Carol

[Guest guest]

Carol - first, I think that if you were transforming you'd know it. Sudden and unexplained readings and numbers, dramatic changes.

AIHA is indeed a tough problem. I can only repeat what I said in my recent e-mail. There are those who say that getting control of your disease will also help any AIHA. That is why I suggested that you might focus on the CLL rather than on the IAHA, and see what should be done about that.

BTW, I do not recall exactly why you felt you needed TX and went on PCR at St. V in the first place. Could you remind me?

Also, going the pred more than once is OK.

But AIHA is a very pesky thing, and some folks really have a tough time with it? Have you spoken to Dr. Furman? Dr. Rai is also very good at this.

In a message dated 2/12/2010 11:11:59 A.M. Eastern Standard Time, heartsong11@... writes:

, I've done the prednisone route for the past almost 3 years andit reached the point where I would rather be dead than go through itsaffect on me again. I became suicidal, lots of problems withdizziness, headache, myopathy, lost my sense of self (truly!!) andgenerally wanted to die. So that's it for steroids. Way too muchanyway!!I've done the Rituxan too and it only worked a short amount of time.There is the possibility that doing more weeks would work better as mycd20 is dim. Arzerra was a possibility too but Medicare doesnt coverit for me because I've never done and failed Fluderabine or Campath.I am hemolyzing again rather badly and need to go in today for labsand possibly Procrit (they'll give it to me if the drop is chemorelated). But I think it takes a week to work???? and my hg willjust continue to drop?????!!I'm just really upset that the PCR seemed to do so well and it's only3 weeks out and everything except the wbc is coming back. My spleenhad gone down to 6cm from 16cm and now it's back to about 12cm!!Rather quickly too. Do you know what the symptoms are fortransformation? Not that i think this is what's happening, but i washaving nightmares all last night trying to figure out what was goingon. Ah, i'm so tired of this AIHA, it just keeps on keeping on likethe energizer bunny. Thanks, Carol