- 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. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
Thank you received: 375
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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