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Fostamatinib/Avatrombopag combination is now Avatrombopag only

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.

1 year 11 months ago - 1 year 9 months ago #72962 by mrsb04

Fostamatinib/Avatrombopag combination was created by mrsb04

My platelet count on 27th January taking daily 10mg Pred and 25mg Eltrombopag was 12.
Fostamatinib on the NHS has been available in Scotland for 2 years and is now, at last, available in England (and I presume Wales).
Alongside 5m Pred/day it kept me reasonably stable during the trial 7 years ago so here's hoping it does so again. Have started on 100mg twice daily.
Who knows one day I might get off Pred altogether.

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CindyL
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1 year 11 months ago #72964 by CindyL

Replied by CindyL on topic Fostamatinib

Was your count in the double digits, mrsb?
I get confused by all the different names for the treatments. I wish all the countries would agree on one name!
I do hope you get off the pred permanently!

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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.

1 year 11 months ago - 1 year 9 months ago #72965 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag

CindyL
Yes count was 12. Sorry I got distracted by the dog having a hissy fit about a pigeon being in his garden.
I have edited original post as also failed to state I have actually started Fostamatinib!!!!
I agree with the confusion. The problem is caused by brand names chosen by the manufacturers. All drugs have a generic name which is generally the same world wide, e.g. Promacta in USA, Revolade in UK generic name for both is Eltrombopag.

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CindyL
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1 year 11 months ago #72968 by CindyL

Replied by CindyL on topic Fostamatinib

Thanks, mrsb!

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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.

1 year 10 months ago - 1 year 9 months ago #73019 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Fostamatinib dose increased to 150mg twice a day from this morning.

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CindyL
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1 year 10 months ago #73020 by CindyL

Replied by CindyL on topic Fostamatinib

Hope it starts raising your counts soon, mrsb!

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MelA
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1 year 10 months ago #73021 by MelA

Replied by MelA on topic Fostamatinib

Ditto what Cindy said!!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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.

1 year 10 months ago - 1 year 9 months ago #73032 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Update
Last Friday my count was 48.
Current meds; Fostamatinib 150mg twice a day, Prednisolone 4mg daily and Avatrombopag 20mg weekly.
I am not tolerating the increased dose of Fostamatinib as well as the 100mg one, and am having to take Metoclopramide regularly to combat the nausea.
I see my consultant again in 2 weeks. Spoke to her on the phone earlier this week, she has increased Avatrombopag to twice a week and is planning to reduce Fostamatinib back to 100mg when I next see her.

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CindyL
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1 year 10 months ago #73033 by CindyL

Replied by CindyL on topic Fostamatinib

Counts are good but it sucks that you can't tolerate the dosage. Hopefully when your dose gets reduced, that part will get better and still maintain the count.

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MelA
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1 year 10 months ago #73045 by MelA

Replied by MelA on topic Fostamatinib

Another week till you see your consultant, right? Will be interesting to see if the increased Avatrombopag has helped.
What are we going to do with you

Sorry to hear the side effect of Fostamatinib is causing trouble! Take care & keep us posted please!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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.

1 year 10 months ago - 1 year 9 months ago #73047 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Avatrombopag is now on hold as the increase in dose sent my count over 400.
Count repeating tomorrow

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CindyL
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1 year 10 months ago #73048 by CindyL

Replied by CindyL on topic Fostamatinib

WOW! That's quite a jump! Hopefully your doctor(s) can get the correct dosage for you soon!

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MelA
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1 year 9 months ago #73049 by MelA

Replied by MelA on topic Fostamatinib

Good heavens mrsb - you win the prize - oh my word! Bet you never thought you'd see over 400k!!
Let us know what tomorrow brings!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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.

1 year 9 months ago - 1 year 9 months ago #73052 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Count down to 243, Avatrombopag on hold until it is below 150.
As planned Fostamatinib reduced to 100mg twice daily, and Pred down to 3mg/4mg alternating for a couple of weeks then down to 3mg daily.
Continuing with weekly bloods and back to clinic in 3 weeks.

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CindyL
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1 year 9 months ago #73053 by CindyL

Replied by CindyL on topic Fostamatinib

Are you comfortable with that number, mrsb? How are you feeling?

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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.

1 year 9 months ago - 1 year 9 months ago #73054 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Cindy
I'm always twitchy with a count above 100. All those big juicy platelets circulating around my system.
Physically I'm fine.

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CindyL
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1 year 9 months ago #73055 by CindyL

Replied by CindyL on topic Fostamatinib

Here's hoping you get to your comfort zone soon.

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MelA
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1 year 9 months ago #73056 by MelA

Replied by MelA on topic Fostamatinib

A much better count mrsb! This ITP is just one big guessing game isn't it?!
Hope things settle for you!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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.

1 year 9 months ago - 1 year 9 months ago #73059 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Count now 5. Avatrombopag reinstated at 20mg on alternate days

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MelA
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1 year 9 months ago - 1 year 9 months ago #73062 by MelA

Replied by MelA on topic Fostamatinib

Talk about a roller coaster - any thoughts on why your count jumped before?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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CindyL
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1 year 9 months ago #73064 by CindyL

Replied by CindyL on topic Fostamatinib

OMG mrsb! That's quite a drop! I wish your doctors could find something that would put you in your safe zone. You certainly are having a rough go of it right now.
I hope things even out for you soon, mrsb.

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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.

1 year 9 months ago - 1 year 9 months ago #73067 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

My count was 31 yesterday. Be interesting to see what happens tomorrow but doubt I'll get the result before Tuesday due to the 4 day Easter weekend. I shall continue on my cocktail of Fostamtinib, Avatrombopag and weaning off Pred.

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CindyL
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1 year 9 months ago #73069 by CindyL

Replied by CindyL on topic Fostamatinib

What a yo-yo rebound! Better than 5 though! I hope they keep climbing, but not too high!

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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.

1 year 9 months ago - 1 year 9 months ago #73070 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Target count is >50 which is fine by me.

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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.

1 year 9 months ago - 1 year 9 months ago #73082 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Count now 134. Avatrombopag reduced to every 3rd day

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CindyL
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1 year 9 months ago #73083 by CindyL

Replied by CindyL on topic Fostamatinib

Wow! That's a good count, but I know you're more comfortable in the 50 range.
Happy Easter!

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MelA
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1 year 9 months ago #73087 by MelA

Replied by MelA on topic Fostamatinib

Well that is much better mrsb !!
Hope that new count is just as good or even better!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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.

1 year 9 months ago - 1 year 9 months ago #73107 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

A count above 800 is not what I want.!!!!!!
Avatrombopag on hold. Weekly bloods continue

If anyone knows how to move a topic into the correct category please let me know. This should be in Treatments General not Newly Diagnosed

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MelA
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1 year 9 months ago #73108 by MelA

Replied by MelA on topic Fostamatinib

Seriously mrsb your count is above 800??
You are a mystery woman for sure - what is going on, bless your heart!!!!!!!!!!!!!!

[I'd click on Report to moderator below, it is above the Quick Reply Reply Quote buttons - as them to move this to the Treatments General section]

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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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.

1 year 9 months ago - 1 year 9 months ago #73109 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Thanks Melanie I have done as you suggested.
Consultant thinks I must be extremely sensitive to Avatrombopag. Now taking baby Aspirin until count lowers

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