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I have finally started the drug trial

  • 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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3 years 2 months ago #72518 by mrsb04
I have finally started the drug trial was created by mrsb04
www.clinicaltrials.gov/ct2/show/NCT03395210 

Started the trial this morning, I am in Part B
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3 years 2 months ago #72519 by MelA
Replied by MelA on topic I have finally started the drug trial
WAHOOOOOOOOO !!

I am so happy for you mrsb !!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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3 years 2 months ago #72522 by midwest6708
Replied by midwest6708 on topic I have finally started the drug trial
Congratulations!   Wishing you success from it.
The following user(s) said Thank You: mrsb04
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3 years 2 months ago #72528 by ImPatient
Replied by ImPatient on topic I have finally started the drug trial
Exciting, I hope it goes well!
The following user(s) said Thank You: mrsb04
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3 years 2 months ago #72529 by CindyL
Replied by CindyL on topic I have finally started the drug trial
That is super news, mrsb!  Hope it works for you!
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 2 months ago #72547 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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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3 years 2 months ago #72551 by CindyL
Replied by CindyL on topic I have finally started the drug trial
That is great news, mrsb!  Hope your count continues going up!
The following user(s) said Thank You: mrsb04
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3 years 2 months ago #72561 by MelA
Replied by MelA on topic I have finally started the drug trial
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
The following user(s) said Thank You: mrsb04
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3 years 2 months ago #72564 by delta809
Replied by delta809 on topic I have finally started the drug trial
Hope your platelets keep going up MrsB!
  • mrsb04
  • Topic Author
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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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3 years 1 month ago #72589 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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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3 years 1 month ago #72590 by CindyL
Replied by CindyL on topic I have finally started the drug trial
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.
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
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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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3 years 1 month ago - 3 years 1 month ago #72602 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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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3 years 1 month ago #72604 by CindyL
Replied by CindyL on topic I have finally started the drug trial
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.
The following user(s) said Thank You: mrsb04
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3 years 1 month ago #72606 by MelA
Replied by MelA on topic I have finally started the drug trial
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
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
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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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3 years 1 month ago - 3 years 1 month ago #72609 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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.
  • mrsb04
  • Topic Author
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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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3 years 1 month ago #72619 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
Count was 5 yesterday. I am NOT increasing my Pred dose. 
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3 years 1 month ago #72622 by MelA
Replied by MelA on topic I have finally started the drug trial
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
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 1 month ago #72623 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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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3 years 1 month ago #72625 by CindyL
Replied by CindyL on topic I have finally started the drug trial
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!
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 1 month ago - 3 years 1 month ago #72626 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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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3 years 1 month ago #72627 by CindyL
Replied by CindyL on topic I have finally started the drug trial
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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3 years 1 month ago #72628 by MelA
Replied by MelA on topic I have finally started the drug trial
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
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 1 month ago #72633 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
Yes Mel I will get a count on Monday 
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3 years 1 month ago #72635 by CindyL
Replied by CindyL on topic I have finally started the drug trial
Good luck on Monday!  Hoping for decent counts.
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 3 weeks ago #72649 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
Last Monday's count was 7 
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3 years 3 weeks ago #72651 by CindyL
Replied by CindyL on topic I have finally started the drug trial
Aww, mrsb, I was hoping for higher for you!
Do you get tested every Monday?  Hoping they are higher tomorrow if you do.
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 3 weeks ago - 3 years 3 weeks ago #72652 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
Count is 11 which surprised me considering the mess the phlebotomist made of my arm. 
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3 years 3 weeks ago - 3 years 3 weeks ago #72653 by MelA
Replied by MelA on topic I have finally started the drug trial
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
The following user(s) said Thank You: mrsb04
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3 years 3 weeks ago #72655 by CindyL
Replied by CindyL on topic I have finally started the drug trial
Yay, mrsb!
I'm with Mel, sorry about your arm!
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Offline
  • 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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3 years 2 weeks ago #72665 by mrsb04
Replied by mrsb04 on topic I have finally started the drug trial
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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