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Anyone else with Refractory ITP?

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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11 years 7 months ago #39966 by amberyard
Anyone else with Refractory ITP? was created by amberyard
Got blood work back today 33k down from 68k last month. Still dealing with the anemic side of all this, going to add B12 to the mix of medications.

I saw the PA today, she told me to keep doing what I'm doing and just keep watch of symptoms. When I had the blood blister on Tuesday morning took 20mg of Pred (she said I did the right thing by not letting them drop any more).

Going back in a month for re check with my doctor and not PA. Both are very nice but seeing the PA is much cheaper.

Either way I am now classified as Refractory ITP, Which is......

Chronic refractory ITP is not common. A review of six case series suggested that less than 10 percent of adult patients initially diagnosed with ITP may eventually be considered to be refractory and require further treatment following failure of splenectomy. The treatment of patients with chronic refractory ITP, defined here as a failure to respond to both splenectomy and rituximab.
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11 years 7 months ago #39975 by Ann
Replied by Ann on topic Anyone else with Refractory ITP?
That's an unusual definition of refractory. It seems a bit like those parents who dread the label for their child changing from ITP to chronic ITP. It doesn't really matter either way.

Thirty three is a great count, enjoy it.
  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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11 years 7 months ago #39979 by amberyard
Replied by amberyard on topic Anyone else with Refractory ITP?
FI am 33 years of age, I wasn't talking about children. But I don't think kids can label refractory, most information is adults.
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11 years 7 months ago #39984 by Winnifred
Replied by Winnifred on topic Anyone else with Refractory ITP?
Refractory means you do not respond to treatments.

Children and Adults can both be labeled chronic and refractory. When I was first diagnosed with ITP I was told that adults were acute and children were chronic. Than after researching ITP I found that it was the opposite usually adults are chronic and children are acute. Over the years I have come to find out that both children and adults can become chronic.

I was so hoping the splenectomy would work you and when it didn't had hoped that maybe afterwards you would start respond to treatment. Can't imagine how frustrating it can be for you!
The following user(s) said Thank You: amberyard
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11 years 7 months ago #39986 by Ann
Replied by Ann on topic Anyone else with Refractory ITP?
Sorry Amber, you misunderstood my post. My fault as it had awkard grammar.