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TOPIC: New to ITP, my story so far...

New to ITP, my story so far... 2 months 2 weeks ago #67966

  • mrsb04
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My count swung about the whole time I was on it. It never did stabilise. I much prefer Promacta .

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New to ITP, my story so far... 2 months 1 week ago #67997

  • Hal9000
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Toby, I get the impression (a need IVIG between doses) that Nplate is not lasting a full week for you. Yes?
Is going to Promacta/Revolade/Eltrombopag an option?

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New to ITP, my story so far... 2 months 1 week ago #68010

  • Toby-Wan-Kenoby
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@Hal9000
No you misunderstood. It is lasting but as I was getting to very high levels due to the interference of the IVIG and following protocol resulting in a break in applying nPlate, in my case I seem to drop off a cliff face. Went from 600 to 1 in the space of 5 or so days.
So this time we will only delay nPlate by a day. My count was 415 yesterday and it would have been nPlate day but I was told to do the injection today. Aim is to get past the influence of the IVIG and see where we stand with the 400mcg of nPlate per week. Hope this clarifies things.
Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 1 month 4 weeks ago #68066

  • Hal9000
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Yes it does clarify Toby.
With that out of the way. Are/were you taking IVIG because of bleeding symptoms between Nplate injections, or ?

You know. The Nplate protocol doesn't really have any guidance on what to do when one is taking IVIG along with it. From what I've seen, IVIG while taking Nplate would only be needed to control bleeding because of the possible complications like you are experiencing.

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New to ITP, my story so far... 1 month 1 week ago #68203

  • Toby-Wan-Kenoby
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So it has been a few weeks. For sure the influence of the IVIG is gone and everything is now just platelet destruction rate against production rate. My count was 176, 151 and 132 giga/Liter is the last 3 weeks. Always measured on the morning of the next nPlate injection. I am now on 500mcg per dose.
Seems like I am approaching a stable count for the first time since my diagnosis in July.
I have had an operation a month ago to extract the metal in my ankle from when I broke that in February. I no longer have any pain from the metal, it was really bugging me and was painful when walking. But in terms of that being any cause of the ITP, no results yet. Maybe it takes a few month for the body to get used to there not being an inflammation. But I would say that is a long shot.

For now I am glad I am stable. As I am only 5 month into this journey there is still a good chance of spontaneous healing. Let’s see what the next few months bring. I will keep this updated.
Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 1 month 1 week ago #68204

  • Toby-Wan-Kenoby
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Hal9000 wrote: Yes it does clarify Toby.
With that out of the way. Are/were you taking IVIG because of bleeding symptoms between Nplate injections, or ?

We decided on IVIG as my count hit 1k and I was getting exhausted. I had petechiae on my feet and chest as well as my face at a count of 1k but no bleeding.

IVIG was not really meant as a treatment more as an emergency intervention due to extremely low count
.

Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 1 month 1 week ago #68205

  • Toby-Wan-Kenoby
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@HAL
I am still unsure how I fit into your classification. Maybe you can help:
My base level is like 3k
On steroids (Dexa) I got up to 60k then after 15 days back to base level.
IVIG I get up to 250k then back down after 2-3 weeks.
nPlate good response and now stabilizing count.
Any help appreciated.
Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 1 month 2 days ago #68226

  • Hal9000
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Toby, from what you've described, sounds like a row 1 response. Though the Dex response wasn't full, that is a definite steroid response. The 2 or 3 week IVIG response is strong/prolonged for row 1. Is that 2 to 3 weeks for counts to drop, or, 2 to 3 weeks before another IVIG treatment?

Is there something making you think another row is at play?

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