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I have finally started the drug trial 1 month 4 weeks ago #72518

  • 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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www.clinicaltrials.gov/ct2/show/NCT03395210 

Started the trial this morning, I am in Part B

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I have finally started the drug trial 1 month 4 weeks ago #72519

  • MelA
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WAHOOOOOOOOO !!

I am so happy for you mrsb !!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 1 month 4 weeks ago #72522

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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Congratulations!   Wishing you success from it.
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I have finally started the drug trial 1 month 4 weeks ago #72528

  • ImPatient
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Exciting, I hope it goes well!
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I have finally started the drug trial 1 month 4 weeks ago #72529

  • CindyL
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That is super news, mrsb!  Hope it works for you!
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I have finally started the drug trial 1 month 3 weeks ago #72547

  • 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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Pre trial count was 6 last Monday, today it is 16. First time I've been in double figures without being full of Pred since May. 

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I have finally started the drug trial 1 month 3 weeks ago #72551

  • CindyL
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That is great news, mrsb!  Hope your count continues going up!
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I have finally started the drug trial 1 month 2 weeks ago #72561

  • MelA
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Fantastic news mrsb !!!!!!!!!!!!!!!!!!
I so pray the increase continues !!!!!!!!!!!!!!!!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 1 month 2 weeks ago #72564

  • delta809
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Hope your platelets keep going up MrsB!

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I have finally started the drug trial 1 month 3 days ago #72589

  • mrsb04
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On a prednisolone rescue as my count crashed to 4 and I'm  covered in multiple bruises. Still continuing with the trial though for the time being.

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I have finally started the drug trial 1 month 3 days ago #72590

  • CindyL
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Saw this on anther post, but didn't want to high jack the thread.
I'm sorry to hear about the count and bruises, but glad you're still on the trial.  Hopefully, your count will go up soon.
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I have finally started the drug trial 4 weeks 2 days ago #72602

  • 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 today my count is 52. I don’t know if it is the trial drug, the increased  Pred dose  or a combination of both causing the  rise from 4  last week.
What  I do know is steroid reduction starts now. I have had the week from hell with Pred side effects. I am not going to do it again. Honestly death by bleeding is preferable to Prednisolone  the way I feel at the moment. 

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I have finally started the drug trial 4 weeks 2 days ago #72604

  • CindyL
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Yay on the  52, but it sucks that you don't know if it's the trial drug or pred.  Hopefully once you get off the pred, your count will stay at 52. Or will continue going up.  Sorry the pred is putting you through hell.
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I have finally started the drug trial 4 weeks 21 hours ago #72606

  • MelA
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Were you put on a high dose?    I'm sorry your count went down and pred was ordered - fingers crossed with a slow taper your count will stay up due to the trial drug.  I certainly understand you saying you are not going to do that pred again!!  I felt the same way when my count hit the gutter before our son's wedding.  Prednisone, the drug we love to hate!!   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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I have finally started the drug trial 4 weeks 18 hours ago #72609

  • mrsb04
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Mel
Yes I was put on the high dose  as absolutely black and blue from huge bruises  with a count of 4.  No point giving me IVIg at it isn't very successful and costs a bomb . A waste of precious donations. I was a blood donor pre ITP and would be horrified if I thought my donation was being wasted.
I'm not tapering too slowly as I need to sleep and have to get back down to 5mg asap.

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I have finally started the drug trial 3 weeks 2 days ago #72619

  • 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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Count was 5 yesterday. I am NOT increasing my Pred dose. 

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I have finally started the drug trial 3 weeks 2 days ago #72622

  • MelA
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Oh I'm really sorry mrsb - how low are you on the pred now?   Will this disqualify you to continue the trial??
I'm sending hugs and good thoughts your way!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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I have finally started the drug trial 3 weeks 2 days ago #72623

  • 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 Melanie
I'm back down to 5mg Pred a day and have to stay there for the duration of the trial which in theory is another 18 weeks. 
So far there has been no mention of kicking me off the trial, but have been summoned to see consultant on Monday. 

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I have finally started the drug trial 3 weeks 2 days ago #72625

  • CindyL
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Aw, mrsb, that sucks that you have to stay on the pred for the rest of the trial.  Hopefully you won't be kicked out of it!
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I have finally started the drug trial 3 weeks 1 day ago #72626

  • 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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Cindy
One of the conditions of the trial was that I had to stay on the same dose of Pred I was on at the start for the duration. I'm allowed extra  as a rescue remedy but cannot go below 5mg. 

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I have finally started the drug trial 3 weeks 1 day ago #72627

  • CindyL
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Oh, ok, I understand now.  I guess I didn't realize that was part of the conditions for you to get into the trial.

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I have finally started the drug trial 3 weeks 22 hours ago #72628

  • MelA
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Is your next count when you see the consultant Monday?  Hoping for a decent count for you mrsb!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 3 weeks 10 hours ago #72633

  • 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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Yes Mel I will get a count on Monday 

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I have finally started the drug trial 3 weeks 2 hours ago #72635

  • CindyL
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Good luck on Monday!  Hoping for decent counts.
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I have finally started the drug trial 1 week 5 days ago #72649

  • mrsb04
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Last Monday's count was 7 

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I have finally started the drug trial 1 week 5 days ago #72651

  • CindyL
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Aww, mrsb, I was hoping for higher for you!
Do you get tested every Monday?  Hoping they are higher tomorrow if you do.
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I have finally started the drug trial 1 week 3 days ago #72652

  • 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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Count is 11 which surprised me considering the mess the phlebotomist made of my arm. 

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I have finally started the drug trial 1 week 2 days ago #72653

  • MelA
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Now that's more like it mrsb !!   Way to go !!

(Sorry about  your arm - some people just should not be sticking needles in arms!)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 1 week 2 days ago #72655

  • CindyL
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Yay, mrsb!
I'm with Mel, sorry about your arm!
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I have finally started the drug trial 4 days 2 hours ago #72665

  • 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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Count is 10 today bruise from Flu vaccination last Friday one of the worst I've ever had.
Covid vaccination the week before and not a mark to be seen !!!!

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