ITP worse after CLL reactivated. 2,5 years after stopping Venetoclax/Rituximab with Umrd. Has anyone tried N-plate? Other options?

[Accordion]

ITP (secondary to CLL) since 9 years. Treated with Prednisolone, Rituximab and trombopotein (Revolade). CLL treatment with Venetoclax 2021-2022. Stopped after one year because of covid but could take a break since I was Umrd in blood. Open heart surgery By Pass in Jan 23. Heart issues. Recurrent activated CLL in August shown in BMP. Less than 5 thrombocytes five days in a row!

Now maximum Revolade 75 mg, 30 mg Prednisolone, Privigen + infusion thrombocytes to be able to install Piccline. Now 38 plt since a few days.. Ramping up Venetoclax again to treat CLL. Specialist dr mentioned maybe try N-plate (other trombopotein) if thrombocytes start to fall again. Has anyone tried or heard of anyone with CLL using this? Any other suggestions?

[Nicebaps]

Hi Accordion

"Yes" I've used Nplate whilst on V. With platelets <10. Was doing subcut 2-3 times a week for about about 4 months before my count started to rise. ITP can be so unpredictable and difficult to treat. Hang on in there ...

[Accordion in reply to Nicebaps]

Thank you! Yes it is certainly totally unpredictable. Platelets fell like a stone from 170 to next to zero ( uncountable) within five days. Out of the blue. Scary. Good to hear that someone at least has tried N-plate! But four months! How did you survive on such low level during that time?

Christina

[JerrysGirl3]

no but I really was doing well with my issues with the venetoclax and the infusion

I wish they could stabilize you 🙁🙁🙁❤️❤️❤️