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Fostamatinib/Avatrombopag combination is now Avatrombopag only

CindyL
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2 years 1 month ago #73110 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination

OMG, mrsb! That's a high number! It's sad that your doctors are having such a hard time finding something to keep you in your safe zone. I bet they are getting just as frustrated as you.
Fingers crossed that number comes down, but not too low.

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mrsb04
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2 years 4 weeks ago - 2 years 3 weeks ago #73130 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

In the right category now, thank you Jeff.

So as reported previously Friday 14th count=886 and Avatrombopag on hold.
Repeat count on 17th down to 481, and on 21st down to 201.
I am to restart Avatrombopag today (Monday24th) taking one dose a week.
Repeat bloods on Friday 28th.
Pred down to 2.5mg/3mg from this morning.

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CindyL
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2 years 4 weeks ago #73131 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination

Well, the 201 is better than 800, but I know it's still high for you. Good news on the Pred being reduced! With any luck, the Avatrombopag won't raise your counts too high again!
Fingers crossed that this combination works for you!

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MelA
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2 years 3 weeks ago #73133 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination

For sure 201k is lots better than the 886k!!!!!
How nice the pred was decreased! Hope you are feeling human again!

"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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2 years 3 weeks ago - 2 years 3 weeks ago #73142 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Hope you are feeling human again!
If only Mel...count on Friday was 5 so now on a Pred rescue !!!!!!
Retest Tuesday 2^nd

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CindyL
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2 years 3 weeks ago #73143 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination

Oh, mrsb, that sucks! I'm sorry to hear this!

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MelA
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2 years 2 weeks ago #73146 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination

mrsb what are we going to do with you - talk about a roller coaster - bless your heart!!
I am so sorry you are bouncing around like a tennis ball - this is nuts. Praying for stability in counts for you!!
Can't wait to hear what tomorrow's count is!
Hugs!!

"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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2 years 2 weeks ago - 2 years 2 weeks ago #73151 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Yesterday's count was 30. Now on Avatrombopag twice a week, Fostamatinib twice a day and 3mg Pred daily.

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CindyL
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2 years 2 weeks ago #73152 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination

That's a better number for you mrsb! Hopefully it goes up just a tad more or holds steady there.

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mrsb04
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2 years 6 days ago #73179 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination

Count on the 5th was 23, on the 12th it was 174.
I took my last Fostamatinib this morning.
Be interesting to see what the result on 19th is. Into clinic on 22nd to discuss with consultant.

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MelA
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2 years 6 days ago #73180 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination

23k to 174k in a week - mrsb you really are a mystery!
Can't wait for your count on Friday - hope it is one you like!!

"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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2 years 6 days ago #73181 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination

Thank you for the update, mrsb! I've been wondering how you were.
Wow, talk about bouncing around! Fingers crossed your count on the 19th is more in your comfort zone!

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mrsb04
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2 years 1 hour ago - 2 years 1 hour ago #73183 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Count on Friday 19th was 10, 2 days after a Covid vaccination and 4 days after stopping Fostamatinib. Extra 20mg Avatrombopag taken on Saturday.

This morning (22nd) count is 23. I have just been to clinic and now going to take Avatrombopag 20mg on alternate days and retest count weekly unless I stabilise then it can to fortnightly. Back to clinic in 8 weeks.

My digestive system is much more settled since stopping Fostamatinib.

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CindyL
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2 years 31 minutes ago #73184 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Oh, mrsb, you surely are a yo-yo! 23 isn't bad for you.
I am glad to hear that your digestion is better!
Hugs from across the pond! (Canada)

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MelA
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1 year 11 months ago #73185 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

mrsb that 10 we don't like - I'd bet it was stopping the Fosteamatinib, what do you & the hematologist think?
Glad you are off that though, your digestive system was taking a beating.

Now that 23 is going in the right direction - I pray that continues for you, upward to a comfortable count and then stabilize!

Hugs!!

"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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1 year 11 months ago #73186 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

I'm not sure Mel I had 2 counts of 5 whilst I was taking Fosta.
I am glad just to be on just one medication. Combinations are all well and good but how does one know which one is working? Or are they combatting each other?

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mrsb04
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1 year 11 months ago #73188 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

197 this week

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CindyL
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1 year 11 months ago #73189 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Wow! That's quite the jump in a week.
And that's with only taking the Avatrombopag on alternate days. Or has that changed?
My heart goes out to you mrsb!

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MelA
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1 year 11 months ago #73190 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

mrsb, mrsb, mrsb - as Cindy said, that is quite the jump in a week. You are a mystery my friend!
Are you staying on meds as is to see if things will even out?
Sending good thoughts to 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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1 year 11 months ago #73191 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Thank you both. Staying on alternate days this week. Retest on Friday and then a dose decision after the result.

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MelA
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1 year 11 months ago #73197 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Tomorrow a decision on the dose - I hope you get a "normal" count tomorrow mrsb, one that you are comfortable with!!

"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 11 months ago #73198 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Hope you get/got good news today, mrsb!

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mrsb04
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1 year 11 months ago #73199 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Count now 323....too high. Missing today's dose then down to 3x a week from Monday

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CindyL
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1 year 11 months ago #73200 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Oh no, mrsb! Hope it settles in your comfort zone soon!

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MelA
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1 year 11 months ago #73201 by MelA

Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Oh mrsb I am so sorry - all this up & down bless your heart!!
Will you test again on Friday to see if 3x a week is better?
Take care now!!

"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 11 months ago #73202 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

I have blood tests booked for every Friday until the end of July.
IF everything settles down and I achieve some sort of stability I can always cancel some.

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CindyL
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1 year 11 months ago #73203 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

That is good to hear. Fingers crossed you can cancel some blood tests!

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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 #73220 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

I only took Avatrombopag 20mg twice between the previous blood test and last Friday's.
Just got the result, count is 165 so am staying on twice a week and begin gradually tapering off pred. Weekly FBC tests (CBC I think you call it across the pond) to continue for a while with monthly renal and liver function and CRP tests.

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CindyL
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1 year 11 months ago #73221 by CindyL

Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

That's a good count for most of us, but I know you aren't comfortable that high. I hope all other functions are normal and stay that way. Good luck tapering the pred!

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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 #73222 by mrsb04

Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only

Cindy I had a telephone consult this morning my target is going to be about 80

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