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Just started Tavalisse (fostamatinib)

  • JVP
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  • ITP since 2012/age 55+/Live in US/ Like many - I'm learning to live with ITP long-term and all the challenges that brings. Here to share some info/experiences.
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1 year 6 months ago #72762 by JVP
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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  • 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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1 year 4 months ago #72910 by karenr
Replied by karenr on topic Just started Tavalisse (fostamatinib)
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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  • JVP
  • Topic Author
  • Offline
  • ITP since 2012/age 55+/Live in US/ Like many - I'm learning to live with ITP long-term and all the challenges that brings. Here to share some info/experiences.
More
1 year 4 months ago - 1 year 1 month ago #72911 by JVP
Replied by JVP on topic Just started Tavalisse (fostamatinib)
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)

4/18/2023 - Last update on Tavalisse - ultimately it did not work for me.  Bumped up to 150 mg 2x day after count tanked to 9 mid Feb 2023 and experienced the severe gastro - diarrhea others has talked about. Stopped mid March at acount of 15. 
The following user(s) said Thank You: Lourdes

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1 year 4 months ago #72988 by Lourdes
Replied by Lourdes on topic Just started Tavalisse (fostamatinib)
Hello! I’ve been taking Tavalisse for almost 3 years now and it has worked with “less dangerous side effects” for the most part actually taking my counts to almost 400 on occasion (100 x2 per day)

 It HAS increased my BP (I was already on meds for it) and I’ve been living with pretty constant - SORRY - diarrhea for almost the entire time. Sometimes I get by with Imodium and sometimes not even that helps.

The challenge with ITP as you know is that it can be so different among patients themselves with differing responses to medications. Please keep us posted. I hope things go remarkably well for you!

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1 year 4 months ago #72989 by Lourdes
Replied by Lourdes on topic Just started Tavalisse (fostamatinib)
Karen - My experience with platelet counts on Tavalisse has been similar to yours in that, on occasion, they go into the 200 - to almost 400 range. When it goes that high consistently, my provider and I have gotten excited and reduced the dose too 100 per day only to have something (like a COVID vaccine or an infection) happen, and they plummet.

So, we’ve settled on 100 x2 per day.

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