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1 year 4 months ago #73368 by dagold
Looking for feedback was created by dagold
Greetings. I just had a strong episode of ITP hit me. Platelets down to 1,000, in-patient 4 days, 4 days steroids, 2 IVIG infusions. Now, 9 days later, my platelets are at 26,000 and I'm out of the hospital though my arms are still REALLY bruised from IVs and blood draws. (Had ITP in 2015 which responded to IVIG followed by 2 Ritux infusions and then Promacta kept me at about 130K for 3 years, then went off Promacta in 2018 and was fine til last week). Met with Hematologist yesterday and he wants to wait and watch platelets for now - no more treatments - and see if they might recover on their own. I'll get labs on Monday and if they are down, then he says we can do either more high-dose steroids or Ritux. I stongly prefer Ritux (followed by N-Plate injections for a while?...Promacta is SOOOOO freaking expensive) since been on prednisone for 20 years (Liver Tx in 2006 from PSC, colon removed in '96 from UC) at 5 mg and have bone loss and high-steroid provoked diabetes (no diabetes usually).  Curious what others think....though, of course, I will always be guided by my doc. Has anyone ever recovered with only 4 high-dose steroid IVs and 2 IVIG infusions?

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1 year 2 months ago #73405 by ImPatient
Replied by ImPatient on topic Looking for feedback
Promacta isn't recommended with a count over 50. 4 days 40mg Dexa is usually the first treatment you get where I am, they see if you recover from that first, if not they continue. So it seems people have recovered from that.

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  • mrsb04
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  • ITP since 2014. Retired nurse. 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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1 year 2 months ago - 1 year 2 months ago #73407 by mrsb04
Replied by mrsb04 on topic Looking for feedback
Starting Promacta with a count above 50 would not be appropriate but  if it is the Promacta holding the count above 50 then it may well be indicated
The following user(s) said Thank You: ImPatient

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1 year 2 months ago - 1 year 2 months ago #73408 by ImPatient
Replied by ImPatient on topic Looking for feedback
Right, I meant I didn't understand why the dose wasn't lowered with a count of 130000 for three years, but maybe there's a reason the doctor knows...
Package insert says something like:
-50 increase dose by 25mg to a max. of 100mg
50-100 use lowest dose possible to maintain
100-150 lower dose by 25mg, wait 2 weeks to see effects. 50-100 use lowest dose to maintain, 
150 stop Eltrombopag check platelets twice weekly, once below 100 take last dose reduced by 25mg

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1 year 2 months ago - 1 year 2 months ago #73409 by ImPatient
Replied by ImPatient on topic Looking for feedback
Oh I see what I wrote first. Of course you can TAKE Promacta over 50. I have a ton of brainfog lately. I didn't express myself right. What I meant is, Promacta shouldn't be used to INCREASE it INTENTIONALLY to much more than 50000, when it is above 50000 already. 

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1 year 2 months ago #73413 by russp
Replied by russp on topic Looking for feedback
I guess I don’t understand why they would use Promacta if Rituxin gave you a response?  Sounds like Rituxin gave no response or wore off shortly and if so then why do Rituxin again this time?   

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