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Update on my platelet count

  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 10 months ago #251 by Angel85
Update on my platelet count was created by Angel85
Just thought I'd update you all on my latest weekly blood test. Just as I thought from the bruises and petechia, they have gone down again. They are back down to 47 from 76 last week. I know 47 is still quite good, but i'm just bummed they have gone down again especially when i am still on the 40mg of pred a day. I see the doctor next tuesday and have another count down before i see him. I just hope they haven't dropped down any lower. :(

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 10 months ago #279 by Sandi
Replied by Sandi on topic Re: Update on my platelet count
I hope they didn't drop either! Good luck!

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 10 months ago #408 by Angel85
Replied by Angel85 on topic Re: Update on my platelet count
My update on my visit with my haemotologist today, my platelet count has dropped again to 21, not sure what is happening there, but he doesn't seem to concerned with that. He thinks he can get the Nplate approved.There is a program where the drug company will pay for the treatment as long as you meet certain criteria, and the doctor believes i meet all of those and he thinks we should get an answer back within 2 weeks if it has been approved or not. I am staying on the prednisone until we know if we can get the nplate approved and then we will start that and start tapering the pred down if the nplate works.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 9 months ago #727 by Angel85
Replied by Angel85 on topic Re: Update on my platelet count
Hey, I am so happy, my latest count came back at 91 today, up from 18 last week and i haven't changed my pred at all, so i don't know why such a drastic change, as long as it is in the right direction though. The Nplate has also been approved, so i will be starting that on friday and from tomorrow, i am reducing the pred from 40mg a day to 20mg!! So excited about the count, i hope the nplate can keep it up to those levels!!

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14 years 9 months ago #729 by snowgoose
Replied by snowgoose on topic Re: Update on my platelet count
That's great news! re your count. So pleased to hear you have had N-plate approved! Do you think a sudden decrease in prednisone dose by 20mgs might be a bit rough to handle? I remember decreasing at a slower rate, and even then it was not pleasent.

Vanessa

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 9 months ago #730 by Angel85
Replied by Angel85 on topic Re: Update on my platelet count
I'm not sure to be honest, but that's what the Doctor has asked me me to do, so i can start the nplate on friday, so i'll do it and if i start to have any major problems, i'll bring it up with him, i'll just see how i go, to be honest, i don't know if it could be any worse then how i am feeling now anyway, but we'll see.

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14 years 9 months ago #731 by alisonp
Replied by alisonp on topic Re: Update on my platelet count
Angel,

I wouldn't want to be on your rollercoaster either!!!

Its lovely when Dougie's count does that - a week off from worrying about it at all! Hope your pred taper goes ok and that the n-plate works well too

Ali

:cheer:

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