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Just started Tavalisse (fostamatinib) 2 months 2 weeks ago #72762

  • JVP
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  • ITP since 2012 55+ in US Like many - learning to live with prospect of ITP long term and all the challenges that brings. Looking to share some info/experiences
  • Posts: 2
  • Thank you received: 1
Hello - I've found so much helpful info and individual experiences from members in this forum so I'm sharing my latest tx try in case helpful to others...
Started Tavalisse 6 days ago - was on Promacta (eltrombopaq) for 3 yrs but dip in count to 16 prompted Heme to suggest alternative. 
No gastro, blood pressure (bp) or other side effects so far - not thrilled about possible bp rise / possibility of taking bp med.  I've seen the stats/ trial data so no huge hopes but you never know! 

FYI - My past treatment experiences:
-WinRho and then Nplate (romiplostin) push injections 1 x wk for 4 wks in prep for hernia surgery in 2016 - at 4th NPlate injection my count made it >65 for a short period - surgery completed with no issues
-Dexamethasone pulse - tried this with no results 
-Promacta - 3 yrs @ 75mg - no side effects - hit 50s a few times but counts mostly fluctuated 20s-30s   (Honestly not sure how much promacta was doing - but with no side affects and counts mostly above 25 - gave some peace of mind not to think about it or get blood drawn as often)
The following user(s) said Thank You: midwest6708

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Just started Tavalisse (fostamatinib) 3 weeks 2 days ago #72910

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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I've not been participating regularly in the forum, so I'm getting to this late. I wonder how you are doing on Tavalisse? I've had some side-effects, but it raised my platelets to a normal--sometimes even beyond-normal--range. 200s, 300s, occasionally 400s--though I've cut the use to every 4th day.

Karen

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Just started Tavalisse (fostamatinib) 3 weeks 1 day ago #72911

  • JVP
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  • ITP since 2012 55+ in US Like many - learning to live with prospect of ITP long term and all the challenges that brings. Looking to share some info/experiences
  • Posts: 2
  • Thank you received: 1
Hello Karen -  Happy to hear you are doing so well on Tavalisse - Congrats that is terrific!

I am doing well and still taking 100mg Tavalisse  2xday as of today 1/14/2023.  My count 3wks after starting Tavalisse actually went down to 13 from starting point of 16.  I suspect I had a bit of negative "rebound" affect from coming off Promacta.  Count at 5wks after starting Tavalisse was 29.  Heme doc and I were happy with that small bump and decided I would continue taking 100mg 2xday - my next blood draw is next month. I suspect this dosage (or drug in general) may not be working for me and may try bumping up to 150mg 2xday.  In reading clinical trial data-many seemed to move to higher dose.  Not giving up hope on this drug for me yet : ) 

Re: my experience with Tavalisse side effects  - I'm was looking out for the most common they list- diarrhea, BP rising, and white cell count dropping.
-Diarrhea - I had some diarrhea about 4 weeks in - this subsided and I realized taking with food greatly helped. 
-Blood Pressure - this went up a little for me - hard to evaluate as I've been doing phone visits and local blood draws as Heme doc isn't close. I go to Rite Aid pharmacy that has one of those BP machines and bought an inexpensive BP cuff from amazon - neither seem very accurate but I sit at 130ish/80ish.  
-White Blood Cell count per last 2 blood draws has dropped, but not significantly or into below normal range. 

-Additionally I did notice very slight morning headaches first few weeks on Tavalisse that have gone away.
-Also worth noting I have significantly less fatigue since starting Tavalisse even with low counts.

Thank you for checking in / your reply and again so glad Tavalisse is working so well for you Karen.

I'll continue to post my experiences in case others find helpful.  Cheers - Jim (JVP)

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