- for upcoming revised ASH guidelines, TPO-RA (Promacta/Nplate) being considered for second line treatment after steroids
- Flu virus turns off one's immune system, side effect on white cells
- Fungus is not believed to contribute to ITP trigger
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Totally agree with TPO-RA as second line treatment.
Did they offer an evidence base for second two?
Yea, the first makes a lot of sense.
The second two were sort of off-the-cuff responses to my questions in a group meeting by one of the doctors. Not part of a presentation. The first one was.
Just came from 'new treatments' presentation. Rate was fast and furious. Will have to review the (purchased) video to absorb it. I think Avatrombopag is better at preventing megakaryocytes destruction than Promacta or Nplate. I think.
There was some 308 conference attendees this year. They said it was a record. LOL, a vacation in Washington DC was a big motivator for me too. While I'm waiting for the video of the conference presentations, a few things from outside of the presentations come to mind.
Had lunch with a young guy who had an interesting story. Started out with a steroid response and Rituxan remission which lasted some 7 months. Relapsed. Didn't respond to more Rituxan and then Promacta too. Went on a high dose 150mg Promacta clinical trial, I think, 2 years ago. I didn't know such a trial occurred. He responded to the higher dose. Is now on 110-120mg average dose. This looks like another row 1 and then row 1 and 4 response in my ITP treatments table.
Another gal I talked with during a break was living with ~10 count and taking nothing. Besides no steroid or Rituxan response, she didn't respond to Nplate 10 dose. I got the impression she was on the original Promacta trial. She had an adverse reaction. I think it was a bad kidney reaction. I wonder if her bad reaction had caused the worries I've read about here, from past PDSA forum members, about Promacta. She also tried Fostamatinib/Tavalisse but didn't respond to it. Apparently her doctor was unwilling to give her Nplate along with Fostamatinib. Have to wonder if that was an opportunity missed.
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