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Timothy at 58k

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15 years 6 months ago #1833 by lucidawn
Timothy at 58k was created by lucidawn
That's the news. Up from last week's 48k. They kept his dose the same as last week. Stable is good.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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15 years 6 months ago #1867 by xray001
Replied by xray001 on topic Re:Timothy at 58k
Hooray - what great news for Tim. How is he feeling?

Michelle
Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594
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15 years 6 months ago #1874 by lucidawn
Replied by lucidawn on topic Re:Timothy at 58k
He seems to be feeling good. Actually getting some school work done too :ohmy:
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
More
15 years 6 months ago #1879 by jsmjboertlein
Replied by jsmjboertlein on topic Re:Timothy at 58k
I don't think I've ever been on here with his counts that high before. GREAT! And getting school done too? SWEET DEAL!
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15 years 6 months ago #1907 by lucidawn
Replied by lucidawn on topic Re:Timothy at 58k
I know. Nplate is working well for him. I'm not sure how long he can be on it, but for now its nice to have a break.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
More
15 years 6 months ago #1908 by jsmjboertlein
Replied by jsmjboertlein on topic Re:Timothy at 58k
I have a friend who's been on it for a while. he goes off when his platelets are super good then back on when they start sropping again. He does well on it and he's in his 80's.
  • 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.
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15 years 6 months ago #1985 by Angel85
Replied by Angel85 on topic Re:Timothy at 58k
Has Tim ever had any vomiting or nausea while on nplate. I had my 3rd injection on Friday and i woke up feeling nauseous and vomiting. It us not listed as a side effect and I'm sure if it is to do with the nplate or if it could just be a bug of some kind
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15 years 6 months ago #2070 by lucidawn
Replied by lucidawn on topic Re:Timothy at 58k
No, Tim hasn't had any side effects from Nplate, but you should report it just in case.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
  • 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.
More
15 years 6 months ago #2137 by Angel85
Replied by Angel85 on topic Re:Timothy at 58k
Yeah, I spoke to my Dr. He ended up admiting me to hospital overnight as i was really dehydrated from all the vomiting and not keeping anything including liquids down, My Dr feels it was more due to a viro gastro bug then side effects from the Nplate.
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15 years 6 months ago #2175 by lucidawn
Replied by lucidawn on topic Re:Timothy at 58k
Glad you got it taken care of. Its always best to err on the side of caution.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
More
15 years 6 months ago #2217 by dbishop
Replied by dbishop on topic Re:Timothy at 58k
Great to hear :)
Mommy to Devyn 3 years old
Moderators: jaycharness
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