Rituximab

[Clarry1234]

I’ve been on Avatrombopag for over 3 years. I’m currently on the highest dose but it looks like I’ve lost response to it (platelet count 30) so now the talk is which immunosuppressant to put me on. Rituximab has been suggested but the consent/info sheet they gave has freaked me out. The increased risk of cancer and possible death doesn’t fill me with joy.

The other immunosuppressant they mentioned was Mycophenolate. I didn’t realise I couldn’t start the tablet and then get the infusion later on so have been given a 2 week reprieve from decision making whilst the consultant looks at the film to see if I have bone marrow scarring from the avatrompobag to explain the loss of response.

How have people found rituximab, during the infusion and after? Any advice? Will I need to book time off work for recovery or just for the infusion? Am I panicking unduly?

How have people found Mycophenolate? I was told the side effects were GI, so that worries me as my guts have never been the same since the steroids at the beginning of this journey.

Oh this purple roller coaster.

[Kazpig1]

hi I have had Rituximab infusions twice now. A few years apart. ( I had a platelet count of 12 at the time). I had the day off work for the infusion. No ill effects during the infusions or afterwards ( maybe I was lucky). I don’t think you are panicking unduly I think any treatment can cause us concern.

[Clarry1234 in reply to Kazpig1]

Thanks for this. I’ve another appointment on Thursday so we will see I guess.

[Lynney11]

A Rituximab infusion was one of the things tried in the early days of my needing treatment. I had no ill effects from the infusion and it increased my count in the short term but it then plummeted, so I have never had another infusion. At the moment I am taking 25mg of Eltrombopag daily and my count is stable at over 100. I am tolerating it well and have been on this dose for 8 years now. Whilst Rituximab failed in my case you may find it is the answer. We are all different and this journey we are on can be rocky for some but smooth for others. Good luck.

[Clarry1234 in reply to Lynney11]

Thank you, yes it is a very individual journey. Eltrombopag did nothing for me but avatrompobag did, for a while.

[Anthonyh7]

Hello Clary.... I had Rituximab in 2010 and agin in 2013.. it worked for me both times giving me normal platelet counts around 150 for 2 and a half years both times. But in 2016 when my platelets fell again I went onto Mycophenolate Mofetil which has served me very well since then. My platelets have been normal ever since , last count 159 two weeks ago. If you email me at [e-mail] I can send you a full written explanation of how I got on with both treatments. There just isnt enough space here to tell you the whole story.

Best wishes Anthony Heard

[Clarry1234 in reply to Anthonyh7]

Thank you Anthony I will email you.

[Robert1959]

Hi ClarryI had Rituximab back in 2014 at age 55 and with a platelet count of 0 however it made no difference to my condition. I had no ill effects either during the treatment or afterwards. NPlate (Romiplostim) was the magic drug that cured my ITP and I have maintained a normal count ever since. I don't know if this treatment has been discussed with you as yet but it may be worth talking to your doctor about it as well.

Regards Robert

[Clarry1234 in reply to Robert1959]

Hi Robert,

I was on Nplate prior to Avatrompobag but they kept having to up the dose. Avatrombopag has served me well the past 3 years but in the last year my response has been waining. I was on 20mg a day this time last year but now at the max 40mg a day.

It is reassuring to hear that many people have had no ill effects with Rituximab whether it works or not. I guess it all depends on how our platelets are being cleared within our bodies.

Thanks

Clarissa

[rjsmyth]

I would ask to try Nplate before having Rituximab. I had Rituximab and it did nothing for me.

[Clarry1234 in reply to rjsmyth]

I had Nplate and eltrompobag prior to avatrompobag. Nplate kinda worked but every other week the dose needed increasing so it was considered that it didn’t work for me. Eltrompobag didn’t get me out of the red and the eating constrains were hard to handle.

[skipster]

same thing with me so now I’m taking doptelet which has been working well now for 2 years

[Clarry1234 in reply to skipster]

I’ve been Doptelet (avatrompobag) for the past 3 years and it’s worked well. Finished my degree and got a job but now I seem to have lost response. So the search continues.

[Anthonyh7]

Clary here is my experience with Mycophenolate Mofetil -

tumblr.com/anthonypaulh/185...

And here is a link to a video on Rituximab - youtu.be/bl1YNKfZJ6w?si=wbx...(Not working as expected?)

Hope this helps

Best wishes

Anthony Heard

[Clarry1234 in reply to Anthonyh7]

Thank you. I will watch that after I finish work. It looks like the workload lull was only temporary.

[Anthonyh7]

Clarry . here is a video on the use of Mycophenolate Mofetil in ITP

youtu.be/A7DzKZA6GH8?si=GEp...(Not working as expected?)

Hope this helps

Best wishes

Anthony Heard

[CJP2]

Hello, I had Rituximab when my ITP was in the acute phase as I didn’t respond to IVIG, and eltrombopag did not work soon enough. They will give you the first part of the infusion to guard against a negative reaction. They will also give you an antihistamine and paracetamol/acetaminophen too. I had one infusion a week over 4 weeks. By the end my platelets were in the 200+. I was still on eltrombopag but reduced dose. I had a remission for 1 yr and 9 months. I had also been on eltrombopag but came off after the first year. Platelets then slowly went down but remained in normal range until I crashed. Tried eltrombopag again, with no luck. Then had avatrombopag and no luck. Then given Rituximab again and it didn’t work. On a roller coaster after that. Romiplostin caused high LFTs; Fostamatanib caused neutropenia; Dapsone gave a rare side effect called Methemoglobinemia. Luckily with that one I was in the hospital (with Shingles)so had great emergency treatment. I had been trying Azathioprine with no results after 3 months; then tried MMF for 3 months…and after all else failed, I was put on Tacrolimus, which has been working. But still on lowered dose of MMF and Avatrombag. Being a very refractory patient 😊, I have tried most drugs in the protocol. My haematologist wants to put me in a trial for anti-cd 38 drug, if eligible. The haematologist likes it as has a different mechanism of action. She is not a fan of using immunosuppressants long term, and I get why now!! But, I have to say, Rituximab was a breeze for me. No side effects and once infusions were done, little to no other meds to take. I did not get any colds, infections, etc. while on it. I was fine right after infusion, function wise. The antihistamine during the one hour infusion put me in a nice state for a short nap. Sorry for the long post, but want you to know, you will be okay and get there in the end. Platelets of >30 don’t necessarily need treatment. My doctor looks a lot at symptoms of being hemorrhagic, not just platelet count. Keep us posted how things go for you.

[Iris]

Hi Clarry. Similar to you Avatrombopag worked for me until it didn’t. (Unlike you I got a year and a half of response from Eltrimbopag). After almost a week in hospital with a count close to zero and bad bleeding symptoms and failing to respond to IVIG which had previously worked, Rituximab was suggested. (I had also previously tried Azathioprine which did not work and had terrible side effects.) I was quite scared about it given the consent form and reading medical journal articles (not advisable), but was desperate to get out of hospital. Had infusion there and three more as an outpatient at one week I intervals. Was very draining but otherwise no side effects. And so far 3 months on it seems to be working well. I’m still taking low dose of Avatrombopag. If you are worried and your team have given you another option, you may want to try that first, especially if you don’t have bleeding symptoms. Good luck!