Choosing the right doctor...

Just wondering how you go about choosing a doctor to treat ITP...
We were "appointed" a hematologist at the hospital last October. So far he has prescribed prednisone and rituxan. The final rituxan treatment was 10 days ago and we are waiting to see what happens. At what point do you really TRUST that they are doing the "right" thing? Is there even a "right" thing? Should we seek a person who only deals with ITP?

There are published Guidelines for ITP treatment. They can be found here:

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

Between that and reading the experiences of others here, you can get a pretty good idea as to what should be done when. There is no particular order, but of course the treatment course should make sense, for example, using harsh chemos first or splenectomy first would not be the way to go.

It's not necessary to find a doctor that only deals with ITP unless you are not happy with your doctors recommendations or you are not responding to any recommended treatments. I saw an ITP Specialist once and wasted my time. Her suggestion was to continue with Prednisone which was what I had been doing. Always know that you have the option for second/third opinions if you are not satisfied with your care, but your two treatments right now seem reasonable.

I wouldn't say there is any "right" thing in treating ITP, but you do want to be sure that your treatments are common and are used somewhat in order.

Is something bothering you about your current treatment?

No, nothing is bothering me about the treatments because I have spent many hours searching treatment options, etc. Everything he has done, seems right in line. I was just hopeful that my 20 year old daughter would be in remission by now. (Because it can happen in the first six months of diagnosis, and we are moving into month 4.) Maybe I am just impatient, maybe I am just not accepting that my daughter may have to deal with this longterm. I guess I just want the miracle...

Remission can happen at any time, not just in the first siz months. Being the parent of a person with ITP is a great way of learning patience though.......

Ali

Alison is right. Remissions can happen at any time. Having ITP for more than 6 months and getting the "chronic" diagnosis only means that she's had ITP for more than 6 months. Keep hoping, anything can happen. I never thought I'd see a 6 year remission after 8 years of dealing with ITP.

Staying above treatment level is great. I know you want to see "normal", but safe can be just as good.