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I have finally started the drug trial

CindyL
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2 years 1 week ago #72667 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Not much change in counts, yay! Sorry about the bruise. We get our flu shots next month. I've only gotten a bruise from one shot. No issues with Covid vaccines.

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MelA
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2 years 1 week ago #72668 by MelA

Replied by MelA on topic I have finally started the drug trial

Ok, that's good - 10k is the same as the 11k so you stayed steady!!
Sorry about the bruise - I was surprised when I didn't get one after the flu vaccine, my arm wasn't even sore. I'm still debating on the covid vaccine, whether to get it or wait to see what the human reactions are to it. I've had 4 Pfizer shots so not sure I want to add Moderna into the mix. I think the Pfizer one is approved here - probably ought to email my hematologist to see what he says. My thing is neither one was tested on humans - but basic ingredients are the same as those in the original vaccines and those were tested safe.

"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 1 day ago #72673 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Count is 14 today.

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CindyL
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2 years 1 day ago #72674 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Yay! Another increase! Is this an indication that the drug you're on is working?

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MelA
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2 years 1 day ago #72676 by MelA

Replied by MelA on topic I have finally started the drug trial

You made me smile mrsb!
How long is this trial?

"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 1 day ago #72677 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

It is 24 weeks long but in all honesty if my count does not start to climb significantly over the next 6 weeks I will be deemed as a failure and booted off

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CindyL
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2 years 22 hours ago #72679 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Aw, that sucks, mrsb! Fingers crossed your counts start going up more!

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mrsb04
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1 year 11 months ago #72692 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Count today is 21

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MelA
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1 year 11 months ago #72693 by MelA

Replied by MelA on topic I have finally started the drug trial

That is fantastic news mrsb!!! You have made my day!!! Fingers are crossed the rise continues so you can stay in the trial!!

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

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delta809
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1 year 11 months ago - 1 year 11 months ago #72694 by delta809

Replied by delta809 on topic I have finally started the drug trial

Hope your platelets continue to rise, MrsB!

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CindyL
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1 year 11 months ago #72696 by CindyL

Replied by CindyL on topic I have finally started the drug trial

That is great to read, mrsb! Hope they keep climbing to a safe level for you!

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mrsb04
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1 year 11 months ago #72711 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

On weekly blood tests my last 3 counts were 21, 14 last week and 11 today. I started with a cold last Tuesday which lasted about 3 days, so I am not convinced a cold is to blame.
I am to continue on trial and see consultant again in 4 weeks. If no great improvement I will probably come off the trial. I am having to take anti emetics every day to suppress the nausea.

We have today discussed future management. Fostamatinib was licensed over here 5 days ago.
When I was on the trail for it all those years ago (Feb to Sept 2015) I had to maintain a count above 50 which I failed to do. During the whole period I was on 5mg Pred a day as I am now. However with fortnightly bloods I only had 1 count under 20 and 10 above 30. I would be willing to go back on it and see what happens.

Avatrombopag is awaiting licensing, hopefully in the near future. I would also be prepared to give that a go but think I'd probably opt for Fostamatinib in the first instance.

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CindyL
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1 year 11 months ago #72712 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Aw, mrsb, I'm sorry to read this.
Hopefully things will improve over the next 4 weeks. Is it the trial drug that is making you nauseous?

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mrsb04
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1 year 11 months ago #72713 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Thank you Cindy, yes it is the trial drug causing the nausea.

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CindyL
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1 year 11 months ago #72714 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Sorry you have to go through that, mrsb.

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MelA
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1 year 11 months ago #72715 by MelA

Replied by MelA on topic I have finally started the drug trial

Are you sure that was a cold, it didn't last long [thankfully]. Oh mrsb I'm so sorry - I really hope when you see your consultant again in a month your count will have gone up. That nausea though has to be exhausting and a real pain. It does sound like you have plans just in case - and that is good. Sending you good thoughts! 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 #72716 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Mel
It was definitely a common cold. 3-4 days is normal for me

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MelA
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1 year 11 months ago #72717 by MelA

Replied by MelA on topic I have finally started the drug trial

You are lucky to have colds that last 3-4 days! Mine always went into a sinus infection - that is until I found out my D was very low and got that taken care of.

"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 #72718 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

I've only had infected sinuses once. It was awful and lasted about a fortnight. 6 weeks later I was diagnosed with ITP.

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mrsb04
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1 year 11 months ago - 1 year 11 months ago #72720 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Count is 13 today.
Seeing consultant again in 3 weeks. I would be surprised if I stay on the trial as I will not meet the criteria of a "sustained increase in Platelet Counts (Efficacy Outcome Measure). Time Frame: 24 weeks, platelet counts ≥50,000/μL on at least 8 out of the last 12 weeks of the 24-week treatment period without the use of rescue medication". Today is week 14 and the only count I have had above 50 ( week 4) in the whole 14 weeks is when I was taking a rescue of 20mg/day of Pred. Apart from that the highest count I have achieved is 21 which isn't even 20 above baseline count.

Discussed Fostamatinib with consultant last week. I failed that trial too as couldn't maintain a count >49 but did manage >30 for most of it so would be happy to take it again as it has finally been licensed over here. Plus I never has a single side effect from it.

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MelA
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1 year 11 months ago #72722 by MelA

Replied by MelA on topic I have finally started the drug trial

Well shoot mrsb! Is it possible you have the placebo - or is this a trial where everyone gets the real thing?
Makes sense to try Fostamatinib 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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1 year 11 months ago #72724 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Mel
Every one is getting the real thing

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CindyL
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1 year 11 months ago #72725 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Aw, mrsb, that sucks! I'm sorry you're going through that. Fingers crossed that things start to improve soon.

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MelA
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1 year 11 months ago #72728 by MelA

Replied by MelA on topic I have finally started the drug trial

Well darn it mrsb!
I hope your count improves!!

"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 10 months ago #72739 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Today is week 15 of 24; my count is 16.

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CindyL
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1 year 10 months ago #72740 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Aw, mrsb, I'm so sorry you're going through this!
Is there anything else you can do?

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mrsb04
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1 year 10 months ago #72741 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

No Cindy
I will give it another couple of weeks and if no improvement come off it and try Fostamatinib again.

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MelA
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1 year 10 months ago #72743 by MelA

Replied by MelA on topic I have finally started the drug trial

I am so sorry mrsb - we all had such high hopes for you and this drug!!

"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 10 months ago #72744 by CindyL

Replied by CindyL on topic I have finally started the drug trial

Hopefully things will improve and you can stay on the trial.
Good that you have a back up plan. I'd give you some of mine if we could share!

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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 #72751 by mrsb04

Replied by mrsb04 on topic I have finally started the drug trial

Can't see it happening Cindy.

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