I have finally started the drug trial

I have finally started the drug trial 6 months 5 days ago #72518

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 6 months 5 days ago #72519

MelA Offline Posts: 1059 Karma: 2 Thank you received: 351	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
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I have finally started the drug trial 6 months 5 days ago #72522

midwest6708 Offline ~ Janet ~ Diagnosed Sept. 2008 Posts: 398 Karma: 2 Thank you received: 91	Congratulations! Wishing you success from it. The following user(s) said Thank You: mrsb04
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I have finally started the drug trial 6 months 5 days ago #72528

ImPatient Offline Posts: 146 Thank you received: 25	Exciting, I hope it goes well! The following user(s) said Thank You: mrsb04
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I have finally started the drug trial 6 months 4 days ago #72529

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	That is super news, mrsb! Hope it works for you! The following user(s) said Thank You: mrsb04
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I have finally started the drug trial 5 months 4 weeks ago #72547

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 5 months 4 weeks ago #72551

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	That is great news, mrsb! Hope your count continues going up! The following user(s) said Thank You: mrsb04
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I have finally started the drug trial 5 months 3 weeks ago #72561

MelA Offline Posts: 1059 Karma: 2 Thank you received: 351	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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I have finally started the drug trial 5 months 3 weeks ago #72564

delta809 Offline Posts: 74 Thank you received: 11	Hope your platelets keep going up MrsB!
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I have finally started the drug trial 5 months 1 week ago #72589

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 5 months 1 week ago #72590

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	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
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I have finally started the drug trial 5 months 1 week ago #72602

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 5 months 6 days ago #72604

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	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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I have finally started the drug trial 5 months 5 days ago #72606

MelA
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Thank you received: 351

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 5 months 5 days ago #72609

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 5 months 9 hours ago #72619

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	Count was 5 yesterday. I am NOT increasing my Pred dose.
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I have finally started the drug trial 4 months 4 weeks ago #72622

MelA Offline Posts: 1059 Karma: 2 Thank you received: 351	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 4 months 4 weeks ago #72623

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 4 months 4 weeks ago #72625

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	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
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I have finally started the drug trial 4 months 4 weeks ago #72626

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 4 months 4 weeks ago #72627

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	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 4 months 4 weeks ago #72628

MelA Offline Posts: 1059 Karma: 2 Thank you received: 351	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
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I have finally started the drug trial 4 months 4 weeks ago #72633

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	Yes Mel I will get a count on Monday
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I have finally started the drug trial 4 months 4 weeks ago #72635

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	Good luck on Monday! Hoping for decent counts. The following user(s) said Thank You: mrsb04
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I have finally started the drug trial 4 months 2 weeks ago #72649

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	Last Monday's count was 7
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I have finally started the drug trial 4 months 2 weeks ago #72651

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	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
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I have finally started the drug trial 4 months 2 weeks ago #72652

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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 4 months 2 weeks ago #72653

MelA Offline Posts: 1059 Karma: 2 Thank you received: 351	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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I have finally started the drug trial 4 months 2 weeks ago #72655

CindyL Offline Posts: 1515 Karma: 1 Thank you received: 225	Yay, mrsb! I'm with Mel, sorry about your arm! The following user(s) said Thank You: mrsb04
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I have finally started the drug trial 4 months 1 week ago #72665

mrsb04 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. Posts: 2077 Karma: 7 Thank you received: 596	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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