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Platelet Update 13 years 2 weeks ago #22

  • 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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Hey

Just thought I'd share my happy news, I just got my latest blood count results back and they are up to 76, I am still on 40mg of pred a day and i have another blood test next week, and then i see the doctor again the week after that, so i am feeling very positive and happy right now. I am almost certain now that the urine infection i had made my platelets drop so low. :)

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Re:Platelet Update 13 years 2 weeks ago #23

  • lili
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Congrats! It's always nice when your platelets go up. :) Hope the trend continues.

Lily

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Re:Platelet Update 13 years 2 weeks ago #49

  • CindyL
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That's a good count. I hope they continue to rise.





Have a great day.

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Re:Platelet Update 13 years 2 weeks ago #93

  • 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.
  • Posts: 522
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Thanks, I hope they continue to rise too, i want to start the new year on a good note.

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Re:Platelet Update 13 years 5 days ago #369

  • 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.
  • Posts: 522
  • Thank you received: 13
Well, my platelets didn't stay up too high for long, last week they went back down to 46, i am having another blood test and see the haeomtologist tomorrow and we will be discussing other treatments like the rituximab and i think he has some info on the Nplate as well, i'll update u all when i have seen him tomorrow.

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Re:Platelet Update 13 years 5 days ago #372

  • alisonp
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Hi

Hope tomorrow goes well for you - whatever the result is!

Ali

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Re:Platelet Update 12 years 11 months ago #822

  • 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.
  • Posts: 522
  • Thank you received: 13
Well, I went in today to have my first nplate treatment and i had a blood test and guess what, i couldn't have the treatment today because my platelet count was too high!!! They are 82 today, and they have to be under 50 and they would prefer it to be under 30 before they start it, so he has dropped the pred frm 40 to 20 and now starting tomorrow, i am on 10mg and i will have a blood test next week and see what they are. I am happy they are 82 don't get me wrong about that, but just can't believe that now i am just about to start the new treatment they are too high to start it! I never would have thought i would have heard that come out of the doctors mouth lol

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Re:Platelet Update 12 years 11 months ago #826

  • julia
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Going the right way, youl be glad to get off the pred though. 20mg drop might throw you for 6 though so id have a couple of easy days, i remember going into cold turkey every drop.
Julia

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Re:Platelet Update 12 years 11 months ago #827

  • 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.
  • Posts: 522
  • Thank you received: 13
I haven't been too bad so far with it, i'll just see how i go over the weekend, i have only noticed myself getting a bit of a headache and a bit of Nausea every now and then, what sort of side-effects did you get just so i know to be aware of what to look out for?, cause the last time i had to taper down from a high dose i was younger and can't remember if i had any side-effects from it.

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Re:Platelet Update 12 years 11 months ago #834

  • jules
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So glad your count was 82 I'm not sure why they didn't go ahead and give you your shot though. here are the dosing guidelines for Nplate:
DOSAGE AND ADMINISTRATION
• Initial dose of 1 mcg/kg once weekly as a subcutaneous injection.
• Adjust weekly dose by increments of 1 mcg/kg to achieve and maintain
a platelet count ≥ 50 x 109/L as necessary to reduce the risk for bleeding.
• Do not exceed the maximum weekly dose of 10 mcg/kg. Do not dose if
platelet count is > 400 x 109/L.
• Discontinue Nplate if platelet count does not increase after 4 weeks at
the maximum dose.
• Do not shake during reconstitution; protect reconstituted Nplate from light; administer reconstituted Nplate within 24 hours.
• The injection volume may be very small. Use a syringe with
graduations to 0.01 mL.
• Discard any unused portion of the single-use vial.

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Re:Platelet Update 12 years 11 months ago #836

  • jules
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So glad your count was 82 I'm not sure why they didn't go ahead and give you your shot though. here are the dosing guidelines for Nplate:
DOSAGE AND ADMINISTRATION
• Initial dose of 1 mcg/kg once weekly as a subcutaneous injection.
• Adjust weekly dose by increments of 1 mcg/kg to achieve and maintain
a platelet count ≥ 50 x 109/L as necessary to reduce the risk for bleeding.
• Do not exceed the maximum weekly dose of 10 mcg/kg. Do not dose if
platelet count is > 400 x 109/L.
• Discontinue Nplate if platelet count does not increase after 4 weeks at
the maximum dose.
• Do not shake during reconstitution; protect reconstituted Nplate from light; administer reconstituted Nplate within 24 hours.
• The injection volume may be very small. Use a syringe with
graduations to 0.01 mL.
• Discard any unused portion of the single-use vial.

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Re:Platelet Update 12 years 11 months ago #837

  • 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.
  • Posts: 522
  • Thank you received: 13
The pred has got me to the 82, not the nplate, i haven't used the nplate before and i have just been approved for a program where the drug company is paying for the treatment. Being on the program, you have to meet certain criteria and one of them is having a count under 50, but the doctor would prefer it to be under 30 to start it, so thats why he didn't want to give me the nplate when the count was at 82.

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Re:Platelet Update 12 years 11 months ago #840

  • julia
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Hi Lauren, every time i tapered i was reduced to a shaking wreck on the sofa, feeling very sorry for myself and generally awful, one thing that helped was jelly sweets but i also put 2 1/2 stone on in weight so i dont think the jelly sweets helped that much! The big tapers were the worst 10mg week and if i remember right the day after the taper was the worst. Good luck you might not feel it as bad if you haven't been on the pred long.
Julia

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Re:Platelet Update 12 years 11 months ago #845

  • 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.
  • Posts: 522
  • Thank you received: 13
I have gone from 20mg yesterday to 10mg today, so i'll watch myself carefully tomorrow, so far i haven't felt too bad, i got a really bad migraine last night but other then that i haven't seemed to have any problems. I have been on it for about almost 3 mths now since december and been on the 40mg for about a mth or so, so i don't know if that would be considered long term or not.

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Re:Platelet Update 12 years 11 months ago #913

  • lili
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Hi Lauren,

You might get away with this 10 mg drop. I usually don't have much trouble with withdrawal symptoms until I get down to about 10 mgs, so with any luck it won't be too bad. Dropping lower than 10 mg, I usually take really slowly because that's when the symptoms get bad.

You're lucky to be able to get the NPlate. I hope it works well for you. It sounds much more tolerable than the pred.

Lily

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Re:Platelet Update 12 years 11 months ago #933

  • Angel85
  • Offline
  • 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.
  • Posts: 522
  • Thank you received: 13
Thanks for the advise Lily, I'll make sure i take it slow when i start to taper under 10mg.
Thanks, i hope it works well for me too, from what i have read, there doesn't seem to be nearly as many nasty side-effects with Nplate as there is with the pred, so i'm happy with that.

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