I have my lab results from Tuesday, and I see that my IgA is up to 1559 g/dL. This tells me that 40mg dex and 50 mg thal each week isn’t working for me. I don’t want to take more steroids or thalidomide. The steroids are really rough, as most of you know. I don’t want to increase the thalidomide because I already have PN and don’t want it to get worse.

Dr. Orlowski told me about a trial for a new treatment coming up. I don’t know a whole lot about it. It involves an anti-Interleuken-6 agent. I’ll have to ask for more details.

My IgA is up again. The 40 mg of dex I take weekly must not be enough to keep it back. Prior to October, I had been taking 40 mg on Saturday and 20 mg on Sunday, and that was keeping me stable pretty well. I couldn’t stand the side effects though, so I decided to cut back to 40. My IgA is now at 1520 mg/dL. Unfortunately, Dr. O is out of town, and we haven’t talked about what to do about it. I’m not thrilled about the idea, but I would go back to the 60 mg/week schedule. I could also condsider pulses of 4 days on/4 days off, like I did (x4) in April, 2003. That, along with 50 mg of thalidomide a day, got my IgA from 4628 mg/dL to 995 in about a month. At least if I did that again, I’d be able to tell for sure if I’m refractory to dex or not. Even though I hate dex, I would be panicked to have to think about what to do next. The thought of SCT, as you know, terrifies me. I’ve been to a hypnotist to try to overcome that fear. If anyone has any ideas about what else I can try, please let me know.