Hi all out there anyone had Rituxamab for ITP ? Start with infusions next week. Serious side effects from Avatrombopag.

[Bowiemolly]

Hi all out there any had Rituxamab for ITP. Started with serious side effects from Avatrombopag.

[Kazpig1]

hi yes. I had two courses of rituximab. Quite some time ago now. Had both as a daycare patient, no adverse effects occurred

[ghostthemovie in reply to Kazpig1]

Yes I had rituximab treatments 2022 - did not help platelets

[Clarry1234]

I’m afraid I have no experience with Rituximab but am on Avatrombopag for over a year now and was wondering if you developed side effects straight away or after taking it a while?

[Bowiemolly in reply to Clarry1234]

Started in late September, tolerated it up to 3 weeks ago. Started with muscle and severe joint pain, from the top of my head to my knees. Stiffened up couldn’t lift my arms. Same happened with N / Plate injections but was on them 2 and a half years. Good luck sounds like you’re doing ok on it. X

[Clarry1234 in reply to Bowiemolly]

Yes, thankfully. I was on a treatment roller coaster until I started it. They wanted to take my spleen out as I’d tried most other things and couldn’t have Rituximab as it was Covid times. Luckily Avatrombopag was just licensed in Ireland so I was my haemo’s guinea pig otherwise I’d have eventually gone down the Rituximab route. Hope it works for you.🤞

[Anthonyh7]

hello Bowiemolly - here is a link to a summary of my ITP story from my ITP blog (see below).

You will see that I had Rituximab twice. Firstly in 2010 and again in 2013. Both times I got 2 and a half years remission but eventually relapsed.

Side effects - very tired for a couple of days after the infusions were given. Also you need to be aware that it suppresses your immune system so you will be vulnerable to any viruses/bugs/colds etc. Another thing I found was being very thirsty so stay well hydrated.

The only adverse reaction I got was after about an hour of the first infusion on both times - I got a bit of a tight chest and a rash appeared on my chest. So they stopped the infusion for an hour and gave me an antihistamine and the rest of the infusion(s) went in without any issues.

I would suggest the following -

1. Stay well hydrated, (take plenty to drink to the hospital too & food)

2. Get plenty of rest/sleep before and after the treatment.

3. Take care , you may need to wear a mask especially when in crowds or busy places.

4. Take plenty of reading material /distractions with you to the hospital as the infusion takes a while.

5. Remember that Rituximab can take a while to impact the platelet count. I responded very quickly (within a week to 10 days both times) but it can take anything up to 3 months.

6. Keep in mind that we all respond differently.

Here is a link to my blog/story -

anthonypaulh.tumblr.com/pos...

Hope it all helps, best of luck. Anthony.

PS - Are you a Bowie fan by any chance ?

[Bowiemolly in reply to Anthonyh7]

Thankyou for your advice all good. Yes Bowie fan seen him in concert ! Got my dog the week he died so called him Bowie. Hopefully I’ll tolerate ok with no adverse reactions.

[Anthonyh7]

Hello again Bowiemolly - you may also find the following link to a presentation we had at the last ITP Support Association annual convention on Rituximab -

youtube.com/watch?v=bl1YNKf...(Not working as expected?)

Hope it helps

All the best - Anthony

[cyclist123]

Sorry to hear avatrombopag isn't working any longer. Best of luck with rituxan. I wonder what treatment people have while waiting for rituxan to show effect.

[IVMama]

I had 4 infusion treatments last fall. I was given antihistamines, prevacid, etc. to combat any effects of the drug. Unfortunately my platelets are dropping again.

[Lynney11]

I had an infusion of Rituximab about 10 years ago. My count went up quite a lot but then rapidly fell, so it didn’t work for me. I tried a range of treatments which didn’t really work but I’m now on Eltrombopag 25mg which works fine for me. My recent count was 153!

[Loftyc]

Hi yes I did do Ritux in Jan/Feb a couple of years ago also had to do Dex pulses for oral surgery I went into remission in the September they are unsure if I was a slow responder to Retux but something finally worked was also doing green smoothies everyday and prebiotics. No side effects from Retux and I was terrified to start it. Hope this helps now at last count 199. Good luck I know it feels really hard going keep hope 🙏

[PBVBJD]

I had two infusion courses (4 6-hour sessions each) of Rituxan (the second after a relapse) for ITP and one for another blood ailment. All worked well, and I did not have any adverse reactions. If I ever have another relapse I would without question have Rituxan again.