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If I fail Promacta, is there any reason to try NPlate?

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8 years 6 months ago #59747 by alevitt
I'm sure I've read the answer to this somewhere but can't place it. If I fail Promacta, is there any reason to try NPlate? My understanding is that the mechanism for platelet stimulation is slightly different, so some people respond to one and not the other.

Any first-hand (or even second-hand) experience or research out there?

Thx,

Al

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 6 months ago #59748 by Sandi
I can tell you from observing here that a failure with one of them does not mean a failure from the other. They do work slightly different.

How long have you tried Promacta and at what doses?

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8 years 6 months ago #59752 by alevitt
Started at 25mg in April, increased to 50mg in May, increased to 75mg in June. It works for a week or two and then my immune system adapts and kills platelets even faster. This week I dropped to 28,000, from 112,000 last week.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 6 months ago #59755 by Sandi
Well, you have nothing to lose by trying N-Plate.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 6 months ago #59765 by mrsb04
I'd definitely give it a try.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 6 months ago #59769 by Hal9000
alevitt, from what I've seen one can move up successfully to NPlate when Promacta doesn't seem potent enough, or, one just never responds from a physiological standpoint. From your description it sounds like the former applies. In the later case, ending up on a low dose of NPlate is possible.

In addition. If higher doses of NPlate end up as a problem for you, consider asking your doc about Azathioprine / Imuran. Those that are strong steroid responders often do well with it. If that combo works, going back to Promacta becomes an option.

I notice in a previous thread that you've taken Rituxan in 2015 and 2016. Did you get a brief remission on the first treatment? Maybe a partial remission response the first time where counts went up to 50 or so for maybe 6 months?

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8 years 6 months ago #59772 by jayinchicago
Promacta and NPlate work very differently.

In my promacta did not work but NPlate works like a charm.

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8 years 6 months ago #59775 by alevitt
Hal9000, yes, I did get a remission on Rituxan. Ten months the first time, but only three months the second time.
Thanks for the input!

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  • Hal9000
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8 years 6 months ago #59776 by Hal9000
Ok, thanks. Do you recall how your counts did when in remission? Did they go up to just 50 or so or much higher?

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8 years 6 months ago #59778 by alevitt
I can do better than "recall" -- I have spreadsheets of all 103 blood draws I've had in the last 32 months :)
After first regimen, it took three months for a response but then platelets ranged from 130,000 to 166,000 for the next seven months before crashing.
Second regimen was actually for AIHA. Platelets had rebounded back around 150,000 by then and were holding pretty steady. The anemia improved pretty quickly during the second regimen of Rituxan, but a few months later my RBCs and hemoglobin crashed again.
Had a splenectomy last August and the anemia improved (and almost a year later my RBCs and hemoglobin are still holding) but by December my platelets crashed again.
My immune system can't make up its mind which type of blood cell it wants to kill, but for now it seems content to go after platelets.
Oh, over the last 18 months I've also been on a yo-yo diet of prednisone -- pumping it when I crash and then slowly tapering down. At first my platelets responded pretty well to prednisone but this last cycle not so much. I'm finally down to 5mg/day and hoping to be off it in the next week or two.

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8 years 6 months ago #59780 by Rob16
According to the experts, yes:

link.springer.com/article/10.1007/s12185-014-1731-7
International Journal of Hematology March 2015, Volume 101, Issue 3, pp 255–263
Treatment patterns and clinical outcomes in patients with chronic immune thrombocytopenia (ITP) switched to eltrombopag or romiplostim
Authors David J. Kuter, et al
"Our results suggest that switching to the other TPO-RA may be beneficial if there is inadequate response to treatment with the initial TPO-RA."

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8 years 6 months ago #59791 by poseymint
I've been on both Promacta and Nplate and found them to be very different drugs. I had different side effects. I responded to both drugs but Promacta was a slow climb to 50K and stayed fairly solidly between 40-55K. Nplate is a bit more up and down- my counts are 43 80 33 70 42 81. Still hovering around 50K which is the target. I personally happen to like Nplate better because I feel good with no side-effects. Most people feel that taking a pill is more convenient but I don't mind going to the clinic every week- its pretty quick, I enjoy the people. Taking a Promacta pill at 3am and getting refills was not any easier than Nplate for me. I've read several stories here on the PDSA forum of people who did not respond to one TPO then switched and had a response to the other. So yes, you might give Nplate a try! good luck

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 6 months ago #59796 by Hal9000
130 to 166 sounds good alevitt.
From what I've seen of reports it is a bit odd for someone who responds well to steroids and IVIG (and thus Rituxan) to have that great of a platelet destruction problem where Promacta appears inadequate. Perhaps the AIHA is confounding things and not a case of having two different types of ITP simultaneously consuming platelets.

It will be interesting where the NPlate dose level ends up. Hope you can stick around to report it. LOL, I've been at this for about a year and only have data for 30-40 blood tests.

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8 years 6 months ago #59809 by alevitt
Thanks, group, for all your input. I really appreciate it.
I think my doc is going to try to push vincristine next, and I want to be able to have a discussion about trying NPlate first. This dialogue has been helpful.
Cheers,

Al

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 6 months ago #59811 by Sandi
Oh definitely push for N-Plate! Vincristine is nasty and can cause permanent side effects.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 6 months ago - 8 years 6 months ago #59813 by mrsb04
I agree with Sandi.
Below is an extract from a paper published last year... www.bloodjournal.org/content/128/12/1547
Evidence for vinca alkaloids (VAs) is drawn mostly from studies conducted in the 1970s and 1980s, with few reports from the modern era.
Published studies vary in which VAs were used (vincristine vs vinblastine), the dose and number of infusions, use of maintenance dosing, and definition of response. Although initial reports were promising, relatively poor durability of response has dampened enthusiasm for VAs. In an early report of 21 patients, two-thirds achieved a platelet count ≥50 × 109/L.55 Several subsequent studies showed similar response rates. However, later studies found that most responses were transient.
In a prospective trial, 35% of patients treated with vincristine achieved a platelet count >100 × 109/L, but a 40% decline in the platelet count was observed as soon as 8 weeks after completion of 3 infusions.51 The fleetingness of response to VAs must be balanced against their toxicities, which include vesication, constipation, and peripheral neuropathy (symptoms generally arise after cumulative vincristine doses of 30 to 50 mg). Because patients have a relatively short time to response (5 to 7 days), we consider VAs for those who require a rapid rise in platelet count and do not respond to standard rescue therapy . VAs are generally not a good option for induction of long-term remission.

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