Lower Promacta dose or try Rituximab

Hello Everyone!

I recently switched doctors and my doc recommended 4 infusions of Rituximab as the next step. I've been on 50 mg of promacta for over a year and have had stable counts of ~100. I've read some articles about studies of people weening of Promacta slowly and being able to maintain stable counts. I've also read some success stories of it happening on here, which is really encouraging! I've never tried lowering my dose to say 25 mg, and there have been plenty of times where I've missed does by accident and I've been fine! Of course, Rituximab would give me longer results if I react well to it, however I'm really scared of possibly having side effects. I called the doctor's office today to ask my doctor what he thought about the idea.

I was wondering what people here thought about the idea and I was wondering how peoples experience were to Rituximab.

Thanks!

Dan

I have had 2 of my 4 Rituxan infusions so far. I had a slight reaction during the first, which was rectified within 20 minutes by stopping and waiting a bit and restarting. The rest of the day went well. No problems second infusion. I have absolutely no side effects after or the weeks in between. I know everyone is different, but it's been a breeze! Only thing I hate is no eating sushi for 6 months!

Hi Dan,

I'm perplexed about why they want to switch you to Rituxan if Promacta is working so well for you? The goal on Promacta is to have your counts hover somewhere near 50, so running counts of 100 is too high (the information is in the dosing papers that come with the medication). Those counts sound to me like you could slowly work your way in dosage down to 25 in slow decreases (first do all days 50mg and one day 25mg... then work up to 2 days at 25mg, etc.) and probably have counts in range.

I chose Promacta as my treatment for the moment over Rituxan because I didn't like the idea that I couldn't be vaccinated for anything for at least a year after Rituxan treatment (I like to travel), The risk of PML, while small, scared me, and the numbers of patients who have good effects after a year was something like 20%.

Personally, I'm going to ride the Promacta train as long as I can, because just taking a pill is easy and I'm getting safe counts (not normal, of course, but in the range required by the medication). I don't have any side-effect issues either.

If Promacta is working for you, I'd read a lot about risks of Rituxan before considering changing your treatment plan.

This is all so new to me, as just being diagnosed this summer. But, it is interesting to see others course of treatment. My hemonc told me that after failed prednisone, Rituxan is the next step before NPlate or Promacta would be considered......

Lol Barb, that's what my hematologist told me as well. I think lots of them have that same playbook:
Step 1 Prednisone, Step 2 Rituxan, Step 3 TPO-RAs (Promacta or NPlate)

I went ahead and did my own research on Rituxan and let my hematologist know that I would be trying Promacta next instead. I'm lucky that I have a hematologist who is open to my concerns about treatment and sees her role in the relationship as giving advice and presenting options. Not everyone is so lucky

So far so good, but if Promacta stops working for me it's back to the drawing board!

Dan, I see no harm in SLOWLY tapering your Promacta dose (with doctor's permission!) and seeing how low you can go without your platelets crashing. momto3boys is right on target with how to do a slow taper.

If you cannot wean completely off Promacta, I would say Promacta is still the less risky choice and therefore preferable, unless there are other factors (side effects you are having? cost?) that I don't know about.

In the UK our N.I.C.E. (National Institute for Health & Care Excellence) guidelines will not let anyone have TPO's until they have a failed splenectomy or cannot keep counts up with second line treatments. I imagine it all comes down to money as the NHS is falling apart at the seams.

I agree with Mom...why switch from a treatment that is working to try something that may not? The average remission for Rituxan is about 12 months. It's a fairly toxic treatment that shouldn't be taken lightly. Usually, the only reason for a 'next step' is when the current step isn't working. Most people use Rituxan and eventually end up on Promacta anyway.

Your counts are actually too high and the dose could probably be lowered some.

Thanks all for the responses!

You've helped me confirm what I was thinking about my dose level. My doctor said he wants to try Rituxan because he sees me having to be on Promacta for the rest of my life, where there might be a chance of remission with Rituxan. My doc is worried about the effects that Promacta has on the bone marrow/liver, which are serious side effects. In my docs eyes, he sees Promacta as an end of the line treatment and that Im a young guy, I'm 29. His thinking is that if I have Rituxan and am successful that I might be med free, for awhile. I still like the idea of trying to ween off before trying something new. Im not experiencing any side effects and things are great so why disrupt something as inconsistent as ITP?

Using Rituxan probably won't give you a lifetime remission either. Then you end up with a choice of using it again or trying Promacta, again. Lowering the dose of Promacta will lower the risks of side effects.

I don't see Promacta as an end of the line treatment. I think it should be moved up in the line.