I need advice - Promacta or Rituximab?

Hello Everyone!

I have been on Deximethasone to higher my platelet counts, however my doctor has given me the choice of Promacta or 4 infusions of Rituximab as the next step. Ofcourse, Rituximab would give me longer results if I react well to it, however I'm really scared of possibly having side effects. I'm really not sure what to choose. Either one is better then the steroids I am currently on, but I'm really having a hard time deciding..........

I need help! Your input is always greatly appreciated!

I'm in a long term remission thanks to Rituxan and have never had Promacta. It seems like the people here who have successfully used Promacta have been pretty happy with it. You have to get the dosage adjusted and not get too high in your counts so it does require careful watching.

I would suggest trying promacta first and then if it doesn't work for you, consider trying Rituxan.

I did have a reaction to my last Rituxan which luckily was only severe hives head to toe but I can't ever use it again. I'm glad it wasn't a more serious reaction involving my joints, and have had normal counts since 2009.
Erica

Hi Vanessa,

I recently had to make this choice for myself and I chose the Promacta path. My hematologist had suggested Rituxan as a next step, but after researching things I decided against that for a few reasons. I was scared of the risk of PML (small chances of course, but it sounded awfully scary!). I also didn't like the idea of depressing my immune system for the immediate future. I like to travel internationally and I would be unable to receive any vaccines for the year following treatment with Rituxan. Those two personal concerns combined with the fact that only 20% of those treated have continued response beyond one year led me to choose Promacta.

Both treatments can be a great choice for treatment beyond steroids, so you'll have to weigh your situation with the trade-offs involved in either case. Lots of people here have great stories with Rituxan too

For me, Promacta is easy to take (I don't mind waking once in the middle of the night to take a pill) and my counts have stabilized very well with the medication.

Good luck with whatever you choose and getting off the steroids is a HUGE positive for most people!

My wife Ellen had Rituxan twenty months ago and is still treatment-free. Nonetheless, if I were advising her now I would recommend Promacta, from everything I have read here and elsewhere. A portion of patients treated with Promacta do go on to achieve durable remissions.

Promacta. I did use Rituxan and wish I'd never touched it. It is very helpful for some people, but Promacta has less side effects and a better success rate. People have gone into remission while on it, and some are able to use a very low dose to maintain safe counts.

I did Rituxan in 2011 and haven't had any issues and have been in remission since then. Haven't had Promacta.

Good luck with your decision.

Thank you so much for all your input! For right now, I have chosen the path of Promacta. If that doesn't work I will try Rituxin. Right now we are working on insurance approval and in two weeks I should be able to start the Promacta. Is it normal to still be scared though? I feel like ITP has really ruined my life. I try to stay positive and live the best I can, but the more I read about the side effects of all these drugs the more depressed I become. I just want to feel alittle better, both physically and mentally.

Totally normal to be scared and sad. It is a big diagnosis that we just have to learn to live with. It is not terminal however. We care! Stay in touch.

You'll get there, Vanessa. You'll realize in time that ITP is manageable and is more of a pain in the butt than anything. Most people do quite well and find that their lives don't change all that much. It does in the beginning, but things will normalize soon.

Hi Vanessa~ Steroids can cause fear, anxiety and depression too. I got depressed after taking Dexamethasone- that is a harsh drug! How much and how long have you been on steroids? Just one 4day round of dexa?

I am currently tapering prednisone and sometimes feel like crying for no apparent reason. For me its clearly the steroid withdrawl that makes me feel sad, because it only happens when I'm adjusting to a new lower dose.

I did fine on Rituxin - no side effects, but it didn't bring my plates up much above 10-20K for 6 mos. I was able to taper prednisone but not completely get off of it. My hemo didn't want me to take Rituxin again because he thought the response wasn't enough to justify the risk. So then I moved on to Promacta.

I liked Promacta because it worked well to bring my platelets up to 50K and it acts like a mild appetite suppressant for some people. I had gained a lot of weight on prednisone and it was great to not care about food!

First few days on Promacta I feel a bit off and headachey, then feel fairly free of side effects. Though I should add that once in 2012 when I was on it, my counts went over 100K and I had memory issues and brain fog. I quit Promacta then and my thinking cleared up. Everyone is different with these drugs, most have very few problems. It worked best for me to take it in the middle of the night so it wouldn't interact with food- esp dairy, calcium, vitamins etc.

I am on NPlate now and really like it. Its somewhat like Promacta. I believe its very important to follow the guidelines and keep counts around 50K on these drugs. good luck!

I just wanted to update you all on my journey. This weekend I started the Promacta 75ml. The next day I started to see that my bruises were going away. I go for blood work on Thursday so hopefully it's working! The worst part is tapering off the steroids!!!!! I feel like complete POOPY! I was in bed yesterday with cold chills, massive headache and muscle aches! Dex is one nasty drug! I feel so low energy... all I want to do is sleep!!! All I want to do is cry. I have two small high energy kids... I don't have time to be sick... This is a nightmare... I'm going to avoid Dex as much as possible from now on!!!