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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72382

  • 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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So with an asymptomatic count of 6 on 50mg Eltrombopag and 2.5mg Pred in mid May Haemo says stop Eltrombopag, up Pred to 5mg and get a test in 4 days. Count came back at 12 which was great as supposedly signing consent for trial yesterday. 
Research nurse emails mid last week trial start put back by a fortnight. 
Bloods last Friday,  haemo rings yesterday morning count is 4 :-have I any symptoms other than a gazillion bruises. No so take another 5mg of Pred  stay on 10mg a day and come into clinic on Monday. If you bleed ring hospital and tell them you are coming in. 
Fast forward to yesterday evening and I start coughing up fresh blood. Shovelled another 10 mg  of Pred down along with 500mg TXA. Ring hospital as instructed and a friend drove me in whilst I constantly coughed and spat into tissues. Bleeding stopped after about 90 minutes.  Count  came back at 5, PCR negative. 
IVIg given over night. Waiting  to see what my count is now.   Hopefully I can go home. I already have a clinic appointment for Monday morning. 
Fingers crossed my count can be kept above 10 without anymore bleeds until the trial starts 
 

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72383

  • CindyL
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Oh, no, so sorry to hear all this mrsb!
I got excited for you when I read that you had signed consent for the trial!  Then I read the rest, and my heart sank!
Hope the IVIG has brought your counts up and you can go home!  Please keep us posted on how you're doing!

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72384

  • 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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Unfortunately not yet Cindy. Count came back at 7 about an hour ago. Sample was taken about  90 minutes after the infusion finished. Cannot go home until in double figures

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72388

  • delta809
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Sorry to hear, MrsB. Hope your counts go back up soon and you can return home.
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72389

  • CindyL
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Aw, that sucks, mrsb!  Hopefully it won't take much longer for your counts to rise.
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72391

  • poseymint
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So sorry to hear it, MrsB :( That sounds miserable, scarey bleeding and very frustrating. I wonder about raising Eltrombopag to 75 along with increased prednisone? Sometimes the combination of TPO with an immune suppressant works better than the single treatment, but I guess thats what you were doing- Eltrombo + pred lower dose. Anyway, take care and I hope the IVig works to get you home!
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72394

  • 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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Home last night with a count of 18. On 20mg Pred until I return to clinic on Monday. Not happy as sleep already affected. Will be grabbing naps whenever I need one.

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 weeks ago #72396

  • CindyL
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Yea you're home!  Crap that your sleep is affected!
Good luck on Monday!
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 weeks ago #72397

  • MelA
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Good heavens mrsb I'm just seeing this and can't believe this is happening to you - I am so sorry!!!   How frightening it must be to cough up blood, it breaks my heart!   I'm happy for you that the consent for the trial is signed, sad the trial has been postponed for a fortnight 

Thankfully your count is up and  you are home!!!  You go to the clinic on Monday [6th?] - hope you get some good news!

Thoughts are with you mrsb!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 weeks ago #72399

  • 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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Thank you Melanie. 
Trial should, in theory, be starting mid July but I am not holding my breath. 
Count was 27 this  morning. Pred reduced to 15mg. Weekly bloods.  
Need to be on lowest dose of Pred possible to keep my count above 10 as whatever dose I start trial on I have to stay on it for the duration (6 months).  

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 weeks ago #72400

  • CindyL
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Good to see your counts are up, mrsb! Fingers crossed you can get to the lowest dose of pred and the trial does start in July!
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 2 weeks ago #72406

  • MelA
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 Hope you are doing well mrsb!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 2 weeks ago #72408

  • 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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Thank you Melanie,  currently on 15mg Pred with multiple bruises and a count of 10. 
I am (allegedly) signing consent on Monday 20th. Then got a maximum of 4 weeks to taper Pred down. 

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 2 weeks ago #72409

  • CindyL
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Aw, mrsb, so sorry to see this!  I was hoping your count would be better.
Good news on the consent signing, if it actually happens!

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 1 week ago #72418

  • MelA
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I was hoping your count would be better too mrsb !!   But on Monday you sign consent so that is great - fingers crosses nothing stops that from happening - and if anyone needs this trial it is you!!   Hang in there and keep us posted!!   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 1 week ago #72426

  • 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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Consent signing delayed until 27th June. Had a HepB screen on Monday  to make sure IVIg hasn't caused a +ve Core Antibody 

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 1 week ago #72429

  • CindyL
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Aw, shucks, mrsb!  That sucks!   Hopefully your HepB test will be negative.   Fingers crossed the consent gets signed on the 27th!
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 1 week ago #72431

  • JJ
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My IG does cause positive hep B. Hope yours is negative.

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 1 week ago #72432

  • MelA
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Dang it mrsb - I'm sorry the consent signing has been delayed a week!!   I'm with Cindy, this does suck! 
Sure hope your HepB screen is negative!!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 6 days ago #72435

  • delta809
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Sorry to hear about the delays MrsB. Hope it works out soon and also for good news with the test result!
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 4 days ago #72437

  • 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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JJ
Does Hep B revert back to negative over a period of time?

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 days ago #72440

  • 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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Consent delayed yet again, hopefully next week. On a positive note though I am Hep B negative 

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 days ago #72441

  • JJ
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JJ
Does Hep B revert back to negative over a period of time?


Yes it will if you stop having the IG but it may last a good few weeks.

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 days ago #72443

  • 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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JJ
Fortunately Hep B has come back negative. I have tried IVIg twice, first time count went from 4 to 13, next time from 5 to 18. I don't think I will bother again. 

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 3 days ago #72445

  • CindyL
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Well crap, mrsb!  That really sucks!  What is causing all the delays?
On the other hand, that is great that the Hep B is negative!
How are your counts?
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 2 days ago #72446

  • 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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Hi Cindy
Delay was initially drug company amending the protocol, now the local R&D team are the hold up. My count is 4. I have TXA tablets to take if I have any bleeding. Am seeing Consultant weekly, down to 6mg Pred a day and aiming to be down to a max of 5mg pre starting trial. 

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ITP ROLLERCOASTER STRIKES AGAIN 3 months 2 days ago #72448

  • MelA
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It is terrible the carrot is dangled in front of you and then keeps getting taken away!!  
Thankfully though you are Hep B clean!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP ROLLERCOASTER STRIKES AGAIN 3 months 2 days ago #72450

  • CindyL
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Oh mrsb, my heart goes out to you.  Wish I could give you some of mine.
Hopefully you don't have much bleeding and you can get down to the max dose of pred.
Fingers crossed everything works out soon!
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ITP ROLLERCOASTER STRIKES AGAIN 2 months 3 weeks ago #72456

  • 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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I  HAVE SIGNED THE TRIAL CONSENT FORM  and parted with an armful of blood.
I am now officially in the 28 day screening period. Platelet count is 6. Have dropped down to 5mg Pred/day from this morning. 

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ITP ROLLERCOASTER STRIKES AGAIN 2 months 3 weeks ago #72457

  • CindyL
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YEA!  That is awesome news, mrsb!
Here's to better things ahead for you!

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