What Happens When It's Time?

Hi Everyone!
I am new to this board, but not ITP. I was diagnosed about 3 1/2 years ago, and thus far, have been in watchful waiting. My ITP was found during routine blood work, and my doctor had me retest CBC four times to make sure it wasn't a mistake.

Since the official diagnosis, I have stayed in the "safe" range, above 50K, with my lowest count being 32K.

Last week, I was supposed to have surgery, so I embarked on my journey of pre-admission testing, and a course of steroids to boost my platelets. My pre-admission CBC came back with a count of 20K. Nothing was said immediately, because we knew I was on the steroids and the count should go up before surgery. Long story short, surgery was cancelled, and I didn't get a follow-up CBC last week. Called my hematologist to find out what to do since CBC was so low, and found out today the message was not relayed properly. I played phone tag with the office today, and once I explained the situation, the nurse helping me became very concerned. She sent me a script for a CBC today, but the lab was closed by the time I got there. I'll go in the morning, but I'm scared.

I know my platelets crash after steroid use, so I don't want long term therapy there, and unless they can prove my spleen is the problem, I don't want splenectomy. Has anyone had experience with other treatments? Does IVIG help? What about the new drugs that have recently been approved?

I have done so much research over the years, and leaned on PDSA so much. I have read the stories and seen the DVDs. I have even started reading Joan Young's book, but had to stop because it was a little too intense for me.

I know I'll be fine, and I'll roll with the punches, but this is not a ride I want to take.

Thanks in advance,
Becky

Hi Becky. Well, it all depends on the outcome you are looking for. IVIG helps some people, not all. It might be a good option to get the surgery done, but counts don't generally stay up very long with IVIG. I think you are a long way off from thinking about splenectomy, especially since you've managed to avoid treatment all this time. That's a bit drastic for someone who has barely treated.

Have you ever been on Prednisone before this; how long ago? Did it boost your counts? I'm asking because it doesn't work for everyone, and some people end up lower than they started. Sometimes it works the first few times then stops working.

Have you ever tried Win-Rho? That might be a good option for now. The newer meds are good treatments, but they are maintenance drugs (meaning you have to keep taking them), and that seems to be more than you need right now too. It seems to me that you just want to get high enough to do the surgery, then get back to your normal average if that is possible. Some of the treatments, in that case, might be overkill.