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Fostamatinib/Avatrombopag combination is now Avatrombopag only

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1 year 8 months ago #73225 by CindyL
80 is a good number.  Good luck!
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1 year 8 months ago #73230 by MelA
I know you aren't too comfy with the 165 mrsb - I sure hope the pred taper goes smoothly and your count can settle about 80k (that is such a nice number), my thoughts are with 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.
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1 year 8 months ago #73232 by mrsb04
This week's count is  92. 

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1 year 8 months ago #73233 by CindyL
That's a good comfortable number, mrsb.  How's the pred taper going?

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1 year 7 months ago #73234 by MelA
Now that's a nice number mrsb!!   Yes, how is the prednisone taper going?

"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 7 months ago #73235 by mrsb04
Thank you both. I am taking it very, very slowly with the taper 3mg/3mg/2mg for a fortnight,  so far so good. Then will go to 3mg/2mg for a fortnight. If still ok will do 2mg daily for at least 2 weeks before another drop. 

Consultant rang yesterday and suggested I  up  Ava  to 3 times a week. Her point being if I contact a virus my count will plummet so I need a safety net.  
I  can see her point but declined for 3 reasons. Firstly I feel less tired on 2 a week, secondly count of 92 was on Friday morning when I hadn't had any Ava since Tuesday evening and finally the protocol for treating ITP is to maintain a count ≥50 on the lowest possible dose. 
I did say that if count went down with this Friday's count we could discuss a slight change of dose. 

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1 year 7 months ago #73236 by CindyL
It sounds like your consultant is reasonable and willing to listen to you.  That's always good.
I'm curious.  Is your consultant a doctor?  Or is he/she what we call a nurse practitioner here?

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1 year 7 months ago #73237 by MelA
 Can understand your reasoning not to up Ava to 3x a week!   Your consultant sounds like he/she works with you instead of insisting you do this or that,  that's really good mrsb!   My fingers are crossed your count stays as is, that would be wonderful!!

Cindy I've had some NPs and PAs [physician assistant] who are better than MDs :)  

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 7 months ago - 1 year 7 months ago #73238 by mrsb04
Cindy
She is a medical doctor and is currently head of the haematology department I attend, which incidentally is also one of the UK ITP Centres of Excellence. 
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1 year 7 months ago #73239 by CindyL
Thanks, mrsb.  I had the head hematologist too.  I no longer see him.
Since I have the BRCA gene, I see the head of Oncology once a year.
Mel, I don't know if we have PA's here.  NP's are becoming more prominent though.  Both Steven and I have seen them.

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1 year 7 months ago #73258 by mrsb04
Count was 81 last week so bang on target 

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1 year 7 months ago #73259 by CindyL
Yay!  Good news!

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1 year 7 months ago #73261 by MelA
Fingers crossed this continues mrsb - you have made my day!!

I saw the head of the teaching hospital's hematology dept for a 2nd opinion - I'm not crazy about "heads", he told me back in 1990 I "would" have my spleen removed - it is still where God put it.

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

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1 year 7 months ago - 1 year 7 months ago #73271 by mrsb04
On the 14th  July my count was 51. My current regime is 20mg Avatrombopag every 3rd day with Prednisolone 3mg/2mg/2mg.
I have a blood test every Friday. However after seeing my Haemo Consultant yesterday  (17th) so long as my count stays above 50 this coming Friday I will be promoted to fortnightly bloods. 

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1 year 7 months ago #73274 by CindyL
Yay!  Finally your comfortable zone!  Is a fortnight 2 weeks?
Fingers crossed you stay above 50 on Friday!
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1 year 7 months ago #73275 by MelA
mrsb that really is good news - and fingers are crossed you get that promotion :)

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 6 months ago - 1 year 6 months ago #73279 by mrsb04
Count =28. Up to 3 x a week Avatrombopag...still on weekly bloods.

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1 year 6 months ago #73281 by CindyL
Aw, shucks, mrsb, that sucks!  I was so hoping that you would remain in your comfort zone and graduate to fortnightly testing.

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1 year 6 months ago #73283 by mrsb04
Me too Cindy  but I'm prepared to give it a bit more time before I completely lose heart 

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1 year 6 months ago #73285 by CindyL
I like your attitude, mrsb!
This may be terrible of me to admit, but even at my lowest, I didn't take the ITP as serious as I should. Treatments were just something I had to put up with.  If one didn't work, I just moved on to the next.  My sister was more concerned with my ITP than I was.
Good luck on the next test!

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1 year 6 months ago #73286 by mrsb04
Exactly Cindy. My daughter in law is much more worried than me. 
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1 year 6 months ago #73298 by mrsb04
Count now 131 so Avatrombopag is working but  finding the appropriate dose is proving difficult 

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1 year 6 months ago #73299 by CindyL
Wow, mrsb, talk about a yo-yo count!  Hopefully they can find the right dosage for you soon.
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1 year 5 months ago #73312 by mrsb04
Count is 64....Avatrombopag 20mg 3 times a week, Pred 2mg a day.
Promoted to fortnightly bloods. 

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1 year 5 months ago #73313 by CindyL
That is great news!  So happy for you mrsb!
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1 year 5 months ago #73314 by MelA
Fantastic news mrsb!!   

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 5 months ago #73330 by CindyL
How are your counts, mrsb?

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1 year 5 months ago #73336 by mrsb04
Cindy 
Last count was 60, getting another test on Friday but won't get results until Monday unless count is under 10.

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1 year 5 months ago #73338 by CindyL
That's a good number for you.  I forgot you were getting tests every fortnight now.
Fingers crossed you're not under 10!
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1 year 5 months ago #73339 by MelA
Oh mrsb that is a great count !!    Let us know what this next test shows!

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

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