Rituxamab

[Shneakyoleary]

This time last year my Platelet Count was 20.000.

I started Rituxamab on October 4th (Every week for four weeks)

Today my levels are 59.000, they haven’t gone above the 50’s during that time, but I am happy with my experience on it so far.

[Fionn123]

Hi, that's my experience as well. I had Rituximab in 2013, my platelets since have stayed around the 50 mark with two drops to early 20s both during the spring so wondering if allergies affects it. Count soon recovers to 50 though. I haven't had any treatment since the Rituximab.

[Beaconshire1624 in reply to Fionn123]

So glad to know Rituximab work so long for you. I did the same in 2016, my have been stay between 78,000-110,000 for three years. Few weeks ago, it drop to 48,000, but I did have allergies. I wondering the allergies affects me ,too.

[conquerator2 in reply to Beaconshire1624]

It looks like allergies and infections are the most common culprit. Both of these usually send my platelets plummeting...

As for Rituximab, I think it is good. I've had it twice so far. The first time it only lasted six months, the second time I don't know yet.

But I do like it!

[Shneakyoleary in reply to conquerator2]

When did you have your last infusion? What allergies do you think could bring it on?

[conquerator2 in reply to Shneakyoleary]

It's non-descript allergies... Wide spectrum which are indeed most prevalent in spring. .

I had my last infusion end of July. So far, my platelets have been between 130 and 250 (my normal counts are usually 130s). But I was stable on steroids before in the 140s range.

However, I was able to taper down to 2mg recently, so Rituximab is definitely working for now. We'll see how long and how well. Previous infusion was 2016 and lasted about 7 months.

[Shneakyoleary in reply to Beaconshire1624]

I wonder what kind of allergies would affect them or could it be weather, i have noticed some bruising (little ones) the last few days appearing in random places for no reason that I can think of.

[Shneakyoleary in reply to Fionn123]

Very similar if I can get three years and beyond it will be great, it’s good to know you experienced a blip and recovered and got stable again on your own.

[conquerator2 in reply to Shneakyoleary]

I personally wasn't stable sadly... It's been different and worse every year. I've tried most all medications short of cyclosporine and celcept or whatever else there's as far as non-steroid immunosuppression goes

I've been lucky enough that all of them worked fairly well though, so I am just trying to find the ones that can keep me most stable and side effect free.

[RINochka in reply to conquerator2]

It's new medication Tavalisse.and also anybody has Antiphospolipid syndrome as well usually come together with ITP

.

[conquerator2 in reply to RINochka]

Yeah I'd be curios about Tavalisse.

[Shneakyoleary in reply to RINochka]

I never heard of this it sounds scary (Antiphospolipid syndrome)

[RINochka in reply to Shneakyoleary]

It other name sticky blood and this special blood test

[Shneakyoleary in reply to RINochka]

Sticky blood - I remember during some of my blood tests they talked about my blood clumping, and I had to get blood drawn a second time, this happened about 3/4 times over the last four years.

[AnthonyHeard Administrator ITP Support Association]

Hello Shneakyoleary, hope that you are doing ok with Rituximab. I had it in 2010 and 2013 getting about 2 years and 8 months remission both times that I had it. I relapsed in February 2016 and have been on Mycophenolate Mofetil (MMF) ever since, which has worked really well for me. I have had platelet levels at near normal levels (give or take the odd blip) since then.

My experience with Rituximab was that I responded quite quickly with my platelet count improving within 2 weeks of the first actual infusion both times that I had it. I then got very few side effects although on both occasions I got a horrible cold within 2 weeks of the final infusion. Some patients take up to 3 months to see a positive response in the platelet count (that goes for Rituximab and MMF by the way).

Rituximab like Prednisolone, Azathioprine and MMF is an immune suppressing drug of course so it makes us much more vulnerable to colds, viruses, infections etc. So things like colds, shingles, flus etc are very much a bigger risk for us.

I decided not to have Rituximab again in 2016 as my specialist suggested that having it twice already it might compromise my immune system too much having it a third time and also it would probably not give me any better result that I had the first and second time. So we tried MMF and thankfully it has worked.

Anyway, very best of luck to you.

If you have any further questions please do ask.

[Shneakyoleary in reply to AnthonyHeard]

Thanks for your comment, and sorry I am only getting around to replying now, I never noticed it before. My update on the condition is that since I had my Retuxin in October/November 2018 I haven't had any further treatment during that time - only checkups during 2020 every 3 months, and now it's pushed to every 5/6 months so the next appointment in May/June 2021. My blood has held around the 92.000 marks give or take but in my last appointment the fell 2000 - I am hoping my next appointment goes well (unless I feel I need one sooner). I wasn't aware that one might only be able to get it so many times before your immune system might get compromised, I would be happy to take it again if the need came about and get a few more years of having pretty much a normal life (although 90.000 isn't normal, its a lot better than where I was at 20.000, a time when I was very worried about it all - I don't want that again. How is MMF working for you now one year on, I don't know much about it.