Mainly venting, but any commentary most welcome

V...
Do you think there would be any advantage to letting Dr. B handle the NPlate treatment instead of my regular guy?
The university complex is huge, bustling, and seems impersonal. It's also at least a 40-minute drive from home, with a hefty parking garage fee. Current doc is only 10 minutes away, free parking, and I just love his office staff. With the weekly shots and blood tests, it would clearly be to my advantage to be nearer to the office.
But I'd make the sacrifice if the medical care would be that much better.

I think if your current hema is willing to do his research, which he seems to be doing you should be fine going to him on a weekly basis. The good news is if you ever need a consult or 2nd opinion Dr. B has seen you and can help if necessary.

Janet,

I just wanted to post to say hello, we seem to have a lot in common based on your posts.

I'm in St. Louis, have a second opinion appointment with Dr. B and I too and looking at what to do for a second line treatment. I even feel the same about my current hematologist being great with a great staff, but feeling like I should see an expert in ITP.

I've already posted details in another thread here, but platelets fell, pred worked at first, not working now, so need to look at what to do next.

I will post more when I have time, but wanted to thank you for sharing so much. It's definitely been a help to me as I try to figure out what next.

Mike

Nice to meet you, Mike.

I've been struggling about what to do for about 5 months. I ruled out splenectomy based on the article here in the Treatments section and on the research papers I found at PubMed and other places. I agreed to Rituxan a few months ago and backed out just before my insurer would have approved it. I was surprised to hear Dr. B refer to both splenectomy and Rituxan as "cures"... That he would want to "attempt a cure" with one of them before resorting to a TPO RA. Maybe it was his way of putting it into a laymen's term. But I think those of us who've been to the rodeo many times realize that there is no "cure".

When is your appointment? I had to wait almost 6 weeks to get in.
Hoping he will have good solutions for your complicated set of issues.

I completely understand the difficulties in trying to pick a treatment and it's good to hear you think you have your approach now. I told my current hematologist I'd pick in 3 days, which was yesterday. I really underestimated how challenging it would be.

My current Hemo is open to any of the treatments you mentioned as next steps since pred is not working. I discussed 3 tests with him yesterday that I thought might help guide my choice, but he doesn't see any value in them. So guess it's back to reading and just picking one I hope works.

My appointment is scheduled for early October, I think it ended up being about 4 weeks from when I called. I continued to call scheduling to see if they have cancellations, but no luck yet. So really not that far away, but given I'm stuck on pred, that doesn't really seem to be helping, but still has all the drawbacks, it seems forever.

I do like my current hemo, I'm hoping I can get some additional guidance on treating ITP with APS and how it might impact my choices. However, after scouring the internet for any material on the above I'm starting to think it's just an unknown.

And it's nice to meet you as well, funny how many things we have in common in terms of where we are at with ITP and our treatments.