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I am no longer on 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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1 year 4 months ago - 1 year 4 months ago #72764 by mrsb04
I am no longer on the drug trial was created by mrsb04
I have terminated my participation in the PRN 1008 (Rilzabrutinib) trial. 
It is a very well organised trial  and I've been closely  monitored but with  a count of 14 last week and 13 yesterday I have failed  to meet the criteria to be offered an extension trial so there is no point me staying on it any longer.
Plus I can now stop taking the anti sickness meds. 

I am allowed to take nothing but Prednisolone for the next 4 weeks and will be monitored weekly. After the 4 week period I can take add in something else. 
I have 4 options open to me
-: Fostamatinib which kept my count above 30  (with 5mg Pred added in) for most of the trial I was on all those years ago. I had no side       effects. However I have now discovered it may affect bone remodelling and is classed as  risk factor for osteoporotic patients. Not that I can   find any research being conducted regarding this. I'm going to contact the Consultant I see at the metabolic bone clinic and ask his advice. 
-: Avatrombopag has finally ( about 4 days ago)  been licensed  over here but it will be about 12 weeks before it is available
-: Myofortic which is closely related to MMF which I've taken before but didn't like. Made me very low in mood. 
-: Rituximab 

Oh for a count above 30 and I'll feel normal again. 

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1 year 4 months ago #72765 by CindyL
Replied by CindyL on topic I am no longer on the drug trial
I'm so sorry to read this, mrsb.   Hopefully you'll find something that works for you soon.
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1 year 4 months ago #72767 by MelA
Replied by MelA on topic I am no longer on the drug trial
Oh shoot mrsb - I'm so sorry, had big hopes for you and this trial!   But it sounds like you are looking forward and have other options to consider.   If you went on Fostamatinib would you have to take the 5mg pred along with it?  It would be nice to not have to take prednisone at all, that stuff is nasty and can cause so many problems.  You will get to 30k and feel normal 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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  • 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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1 year 4 months ago #72768 by mrsb04
Replied by mrsb04 on topic I am no longer on the drug trial
HI Melanie
Hopefully I will be able to taper off Pred but I'm not going to rush it. 

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1 year 4 months ago #72772 by MelA
Replied by MelA on topic I am no longer on the drug trial
You are smart not to rush pred as you have been on it a while - and as I said, that stuff is nasty!!   I know in my heart prednisone caused problems with my knees & shoulders and made my skin thin.   

"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.
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1 year 4 months ago #72792 by mrsb04
Replied by mrsb04 on topic I am no longer on the drug trial
So my count on Friday was 5 and is 10 today. I am covered in bruises and have volunteered to put my pred dose up to 10mg/day for a few days. 
I have  had 46 platelet counts since I started Atorvastatin in February. Only 6 times has my count been above 20 since then and 17 times in single figures. Haemo has stopped the statin for 3 months. Be interesting to see if count improves.

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1 year 4 months ago #72794 by CindyL
Replied by CindyL on topic I am no longer on the drug trial
Aw, mrsb, I'm so sorry you're going through this.  Wish I could give you some of my platelets.
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1 year 4 months ago #72795 by MelA
Replied by MelA on topic I am no longer on the drug trial
If the lower counts started w/the statin then it would seem that is the problem.  
mrsb you sure are having a time of it - I'm so sorry!!!

"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.
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1 year 4 months ago #72797 by mrsb04
Replied by mrsb04 on topic I am no longer on the drug trial
Mel
Maybe more a case of the statin not allowing my counts to climb  as they had been low for a couple of months before I started taking it. 

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