Success with Rituxan

Hi there!

All those of you who have tried Rituxan as ITP treatment, how was your experience and success rate? I have been diagnosed with secondary ITP for a year now and my count kept dropping under 20k even after a severe blah prednisone treatment. I haven't had any bleeding symptoms in the past year. And I feel great. It's just everytime I get a CBC I get a panic value result for platelets. So reluctantly I agreed to Rituxan treatment. I recently had my 4 week Rituxan treatment which went very smoothly. It's been 5 weeks since my treatment ended. My platelets actually dropped to 16k during the treatment and 18k 4 weeks after the treatment (which was last week). But, this week suddenly my count is 107K. Is Rituxan's effect so sudden usually? Has anybody seen such a big jump in count from 18k - 107k in just 1 week? I am just so surprised how much things changed in my CBC in just 1 week.

I am not sure if my good count is Rituxan's magic or just my platelets being in a good mood. How was your experience? Please share.

The same thing happened to me. My counts went from 3k to 150k in a week. I had 13 months treatment free, then had Rituxan again. The second remission is lasting 8+ years.

My counts jumped up pretty quickly too, I don't have the exact numbers.
Erica

My counts started going up right from the beginning. I had no issues with any of my treatments.

I had Rituxan gave me 6 year remission. Although I do not know how soon it started working as I had a Winrho/ Rhogam treatment 1 week later started the 4 weekly Rituxan treatments. Rhogam/ Winrho back than was being given to me every 6-8 weeks I believe.

That's awesome! Thank-you for sharing. I was a little worried that next week my count is going to drop again. But I am feeling hopeful from all your experiences. You guys rock!

I'm glad for your success with Rituxan, Jalpa.
I'm currently struggling with the decision to take it. Hearing your happy experience with it helps.
And I agree... These guys do rock!

Midwest6708 - Making the choice on which treatment to use is hard. I say to everyone research research research. Look into all options all treatments and all possible side effects. If you look into all options it helps to make the decisions!


May I ask what is making you struggle? Look into what is worrying you about the treatment. Trust your instincts!

Winnifred wrote: Midwest6708
May I ask what is making you struggle? Look into what is worrying you about the treatment. Trust your instincts!

I'm afraid of side effects - minor ones with the infusion, to major ones such as serum sickness, or triggering of another AI disease. I've been around the block enough to know that bad medical outcomes don't always happen to "the other guy". I would be less reluctant to accept the risks if I actually had a need to frequently treat. But in 5 years, I've only needed treatment twice for a count below 10. So, I think my MD's desire to use Rituxan is overkill at this point. He wants to do it because this time my count isn't staying stable during taper attempts. I'd rather take the risk of staying on the pred a little longer than to use something that I see as riskier.

Life would be so much easier if I could force myself to be a silent, compliant patient. These docs must really hate to see me coming. ~sigh~

Janet:

It's funny how different each case and each person is. Five minutes ago I told another person that Rituxan isn't a bad way to go. That was based on their particular situation. Then I read yours and completely understand why you feel the way you do.

If I'd had your hindsight, I may have avoided Rituxan and if I had, my life would probably be completely different than it is now. Rituxan was the start and the cause of a continuing downward spiral of health issues. My goal at the time was to get an ITP remission. I'd easily trade that remission now to get my life back. I thought low counts and fatigue were hard to deal with. That was nothing compared to what's going on now.

Listening to your reasoning, I can totally see why you prefer to stay the course with Prednisone. No, it's not good for you, but honestly, none of the treatments are. With Prednisone, you know what you're getting and you know what to expect. Of course most people do fine with Rituxan, but you're right, bad things do not always happen to the 'other guy'. I certainly never saw it coming.

Sandi, you have no idea how much it means to me for you to affirm that my reluctance is justified! Thank you for expressing it, because I respect your knowledge so much that I'm more confident about my decision now. I really wish too that those hands of time could be turned back for you.

And Winnifred... Thank you for asking that question! Writing the explanation to you organized my thoughts, which made the discussion with my doctor this morning more productive and less emotional. It was a 'dress rehearsal' for that OV, of sorts. I committed my words to memory, and they were the argument I made to him.

For now, we have decided together to keep on with the pred for another month and proceed from there. I'm to have a DEXA scan to see if the pred is doing as much harm as he fears. We'll see. One thing at a time... But at least for now, the 'thing' isn't Rituxan.

Janet:

I'm glad that my post came after your decision with the doctor. I prefer not having had influence on that; an after affirmation is better. Your post really got to me and that doesn't happen very often any more.

Back when I had Rituxan, it was not all that acceptable to have less than normal counts. Not like it is now. I might have made different choices if that had been more accepted. Also, I didn't know about serum sickness. I think I was the first one here to have that side effect, and I stupidly did not look at the list. Even if I had though, I would have brushed it off as unlikely like all of the other listed side effects, and I couldn't possibly have known what serum sickness would end up triggering. You live and you learn.

Now after saying all of that, I am still an advocate for Rituxan as I think it does have its place. But people do need to carefully weigh the pros and cons of treatments and not blindly allow doctors to over treat when it may not be necessary. I am glad that I pushed for Rituxan, my Hemo didn't. I am glad that I don't feel the need to blame him. If he'd pushed it, I think I would resent him now and I wouldn't want that. He did try to push splenectomy and I always said no. I'm grateful that I stuck to my guns on that one because as it turns out, I think that spleen has come in handy over the past few years.

This is a good group. Everyone learns from each other and we make each other think. You just can't beat having that advantage when dealing with ITP or any other chronic disorder.

PS - I get the DEXA scan every year and so far, have been fine. I've been on Prednisone for a very long time. I'm sure as I get older that will change. My Mom is 76 and has osteo. Eight weeks ago, she fell and broke her hip. It's been a nightmare.

My platelet count is down to 66K this week. Even though it dropped from 107K last week, I still consider it pretty great. I am not sure if this means the Rituxan is not working as expected. I am just going to have to wait and see. Has anyone had a similar experience? High 1 week, low next - post Rituxan. I just wish my platelet count would get stable. Any tips on that?

And Janet - I think we all have to find what works for us. I still haven't found the right answer. I am glad you made your decision. I wish you get to desired results soon without any blah treatments. Side effects are very scary. Although I had a worse time with prednisone side effects and I know I'd never want to be on it again. You are smart to do your research beforehand. I have been just believing my hematologist till now. I wish I had avoided the prednisone. But, now I am getting all into it and asking questions everywhere, as I really do not want to go for a spleenectomy.

Wishing you all a healthy platelet-high week!

I hope the Rituxan will stabilize your counts soon, Jalpa. Wishing you great success with it!

I realize after re-reading this discussion that I might have come off as being anti-Rituxan, and I apologize for perhaps sounding critical of your choice. I truly am not, and am happy that you have another option besides your dreaded prednisone. I agree with you that we all have to evaluate our comfort levels regarding counts, meds, and their side effects. There is no one right way to deal with ITP, and I wish MDs would start being more flexible regarding patients' wishes.

I avoided taking Rituxan for about 6 months myself as I was worried about the possible side effects. I ended up doing it and it was cake for me. Treatments were easy, fast, and very effective. You need to remember that some of the worst things they write included very sick and older cancer patients who get Rituxan. In fact, Ritixan seems to be used for a variety of immune disorders as well so I would guess people with ITP represent the lowest risk group of the sample set.

If you are young and otherwise healthy your risk of serious Rituxan issues is way lower. No-one can say for sure if you will have an adverse reaction but it's very likely you won't.

I'm glad I took it. Hoping for a long remission. It's been about 7 months now and still have "normal" platelet count. I go again in May for my next blood test.

Hey russp,

That's great that your platelet count is stable and 'normal'. How long did you have to wait before you started seeing desired results?