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Timothy 36k

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15 years 8 months ago #4262 by lucidawn
Timothy 36k was created by lucidawn
Weekly update. They did of course increase his dose. I asked and they said he does have a way to go before he maxes out on the dose (good to hear). I'm not disappointed at the drop...I've come to expect it :P
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 8 months ago #4295 by Ann
Replied by Ann on topic Re: Timothy 36k
I wouldn't worry about the drop either. My counts have been all over the place with Nplate. There are ten doses to try. I gradually worked my way up from dose 1 to 5 and now have more quickly worked my way back down to 1 again, and this week have a count of 151. He obviously responds well to the drug so anything could happen.

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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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15 years 8 months ago #4300 by Angel85
Replied by Angel85 on topic Re: Timothy 36k
36 is better then what i have been getting. Mine was 13 on friday and i have only 2 weeks left till i get to the max dose, i am going in for a bone marrow biopsy on wed to have a better look at what is happening cause my white cell pattern looks funny or something apparently.

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15 years 8 months ago #4305 by xray001
Replied by xray001 on topic Re:Timothy 36k
Well, goodness, I don't know what to say. I was so excited yesterday when I read that Tim was up in the 150's, and now he is back to below 50. I am sorry to hear that. Did you expect this, being on the NPlate?

Lauren, how old are you, andhow long have you been diagnosed?
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 8 months ago #4314 by lucidawn
Replied by lucidawn on topic Re:Timothy 36k
Lauren,
With Timothy I have learned not to expect anything, but treat as best we can and ride it out. I'm sorry your're maxing out on the dose. Possibly you will bounce back up. Hope you get answers from the BMA that will aid in your treatment but not be too serious.
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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  • 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 8 months ago #4324 by Angel85
Replied by Angel85 on topic Re:Timothy 36k
Michelle, I am 24, 25 in a month and have had Itp since I was about 5 years old.

Donna, yeah I am still hoping they will go back up and I am hoping to get answers from the BMA that will help us, thanks. I hope Tim goes back up higher

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