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

New to ITP, my story so far... 10 months 1 week ago #67966

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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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... 10 months 23 hours 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... 10 months 8 hours 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... 9 months 2 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... 9 months 10 hours 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... 9 months 10 hours 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
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Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 9 months 10 hours 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... 8 months 3 weeks 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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New to ITP, my story so far... 3 months 4 weeks ago #69163

  • Toby-Wan-Kenoby
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Duplicate
Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 3 months 4 weeks ago #69164

  • Toby-Wan-Kenoby
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It has been a while but I am now at an inflection point I thought I update my story.

I have been on nPlate for the last 5 months. At first on 650 mcg. I never reached a steady state but for a few mouths an almost steady state where it fluctuated between 80-650 giga/liter. Lately we had To increase the level as my count was not responding as usual. We went to 900 mcg with little real effect. I did respond but it lasted shorter. My take is that I am just producing a lot of antibodies.

A second issue I developed (even though this precedes ITP, but was just now diagnosed) is a polyneuropathy of the nerves in my legs. Most likely also a autoimmune issue.

So we stopped nPlate and I am now on 3 months of IVG. 1. Month just happened. Total of 2g/kg of body mass administered over 4 days. On my 3rd day I had a count of 80 giga/l. 3 days after the last course it was down to 9 giga/l. I just seem to have a lot of antibodies.

So now I think I am just going to try to not worry about the low count. I might get an intermediary IVG but other than that I wait for next month. I feel my body just needs a break from all the interference.
Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 3 months 3 weeks ago #69170

  • MelA
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Toby - polyneuropathy is peripheral neuropathy [PN] from what I have read. I have PN, idiopathic. Most doctors ask if I'm diabetic as that is a common cause of PN and NO I am not! I developed this well after ITP diagnosis - no cause has been found and because I now refuse the medications that are tired for PN because of the side effects I am only doing acupuncture [once the office opens again] and 600mg of Alpha Lipoic Acid a day which has been proven to help & for me it helps a little bit. Are you seeing a neurologist?

Sorry you have this to deal with now - take care!

www.virginiamason.org/polyneuropathy
What is Polyneuropathy?
Polyneuropathy, the most common form of a group of disorders known as peripheral neuropathy, is caused by damage to peripheral nerves (defined as all nerves beyond the brain and spinal cord). Peripheral nerves travel from the spinal cord to muscles, skin, internal organs, and glands. In polyneuropathy, many nerves throughout the body malfunction at the same time.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP, my story so far... 2 months 3 weeks ago #69342

  • Hal9000
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Toby, has your doctor mentioned Doptelet, aka Avatrombopag? It is like Promacta, but more potent.

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