What next?

Okay, so I've had ITP for 12yrs. I have had the treatments of splenectomy, prednisone, rituxan. For me the Rituxan seemed to work the best.

When this all started, I had a hematologist that I loved. She moved away and I got hooked up with this other one. He is very good and I trust him. But, the difference is that he is very aggresive when it comes to ITP. He has run me through a variety of tests which included a CT scan to see if there are any accessory spleens. All of the tests have concluded that nothing else is causing my ITP. So..here is his theory....

He says that if you have tried the splenctomy and you are still having symptoms..here is what you do....You cant live on prednisone. Whinro is not an option..actually a waste of time. IVIG should only be used in the event of an upcoming surgery. It's expensive and a short term thing. rituxan can be used successfully but he doesn't like the possible side effects. So, basically if nothing else works he suggested a mild form of chemotherapy. Can't remember what he called it but it scared me nontheless.

So what do I do?...what's next?

Has anybody ever been told that chemo is an option?...he said it should get rid of it all together because it basically restarts your immune system..But what if it doesn't work?

Lot's to think about

Will only do Rituxan if my counts go below 30K..Just had a relapse and counts were down to 7K. Now at 53K with no treatment. Sure hope Rituxan is the only thing I need.

The two chemos that are used for ITP are Vincristine and Cytoxin. They are so rarely used that I have only seen two or three people try it here over the last 15 years. Both of those drugs can have serious side effects, so I don't know why it would be preferable over Rituxan. It's very possible that you may not respond at all to Vincristine or Cytoxin and it is a very aggressive way to treat. I might only consider either of those if I had severe ITP symptoms and did not respond to anything else. The problem with these kinds of drugs is that they can raise the risk of cancer. Is it worth that?

He may have been talking about Imuran or CellCept, which can be a more commonly used approach. These two are strong immunosuppressants.

You have several options and if Rituxan worked before, I'd think it would work again. There are the TPO's if need be, they are becoming popular treatments and are used more regularly than chemo.

You know I think Imuran sounds familiar. I wonder if that isn't the one he mentioned. Do they use that for lymphoma patients?..

A lot of these treatments are used for lymphoma, including Rituxan. I'm not sure how often Imuran is used for that. I haven't seen many ITP remissions from Imuran, but it can get counts up if a person is responsive. I might be using it for Lupus soon but am not sure I want to because of the cancer risk. All immunosuppressants carry that risk, including steroids, but some are worse than others.

With all treatments, you have to consider benefit vs risk, so if counts are not in a dire situation or symptoms do not warrant treatment, you need to decide what is truly necessary.

I am definatly not going to allow him to force me into any treatments that I'm not comfortable with. The thing is also that I never see anybody treated with such harsh drugs. I'm confident that Rituxan will work for me if needed. I am glad however that he is so on top of things with this. He knows what he is talking about I think. But, it is still my disorder not his and I'm in control of the decisions made when it comes to my ITP. Is is nice to know that there are options. Thanks for your feedback.

I agree with this phrase by your hemo:

You cant live on prednisone. Whinro is not an option..actually a waste of time. IVIG should only be used in the event of an upcoming surgery. It's expensive and a short term thing.

And, I agree that the option you choose next should be your decision. It's not like you are choosing something that isn't a valid ITP treatment. Good luck and stay in touch!

I also agree. Do lots of research. Pdsa is a wonderful source of information. Find treatments you feel comfortable with and find a doctor who feels comfortable as well. It may be time for a 2nd opinion.

I am in Nplate and cyclosporine and started 5 weeks ago. I have weekly kidney tests to check for tests. My levels have been between 51-198 this month, which haven't been since December!


Use your own judgement. If you do not feel comfortable get a 2nd opinion. I went to an itp specialist and that changed my whole outlook in this disease.