Nplate fail- Low Dose Truxima

I was diagnosed ITP in 2009 count of 6.(diagnosed Lupus/Sjogrens 2017). Tried steroids, Dexa, Promacta. Rituxin 4 doses of 375 brought my counts to 25 for 6mos.
Began Nplate in 2014 and have done well for 11 years. Counts have been in my safe range of 20-60. 
2023 after a Covid vax, my counts fell into 10-15 range and never recovered. Counts recently have fallen further to 5-12 range. Nplate dose increased to 625mcg did nothing. (side note: For me, low counts are not an emergency. Never had a bleeding event. I follow Dr Drew Proven’s advice to watch symptoms, not numbers.)

Feb 2026 I was scheduled for 4 Truxima infusions of 500 each. I did one infusion which flared up my Sjogrens neuropathy (burning mouth, wide-spread prickly pain, unwell) so bad that I canceled my next infusion. Doctor said it was ok to stop Truxima, watch and wait to see if it did anything. I am continuing Nplate weekly at 625.
After just 5 days post infusion, my counts came up from 7 to 24. Next week 21, following week 30. These are actually great counts for me. I’m very happy that one infusion worked to bring me above 20.
So will keep on NPlate and watching until I see doc in 3 wks. Then will decide if I can stop Nplate. And decide if I should do another infusion of Truxima. If my counts hold, it doesn’t seem necessary. I could wait, do another dose when counts fall again. My doctor lets me do pretty much what I want so I’m lucky there. For now, keeping my options open.

ps. Hematologist is excited for me to try a very new drug- Wayrilz/ rilzabrutinib. Cost is insane- $17,500 a month. It’s a pill. Medicare will pay. Patient pays max copay of $2100. per year. Thats too much for me to experiment with- what if it doesn’t work or is intolerable? I’m signed up to get a 1month free trial. It’s on their website, clinic advocate signed me up.

Yeah, I threw around Wayrilz and Tavalisse with my doctor today, but going with cheaper Cyclosporine, and if that doesn't work, Danazol, but I have cyclic thrombocytopenia.

It does kind of mess with your head the expense of a pill. Interesting, the "free" trial that you mentioned. I see it on the website, like you said. Certainly good to know. Actually, since I'm rare with the cyclic thrombocytopenia, you never know if the companies would possibly love to see how their product works with me... But I suppose a single person does not a trial make.