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TOPIC: Nplate loss of response, antibodies to Nplate?

Nplate loss of response, antibodies to Nplate? 1 week 6 days ago #67205

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Has anyone experienced loss of response to Nplate and/or had to increase dosage after being on it for a number of years?

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Nplate loss of response, antibodies to Nplate? 1 week 6 days ago #67206

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I lost response to it after about a year. My count dropped to 6 the day before I was due to have surgery which was of course then cancelled. I was never over happy on it, my counts swung about like a yo-yo. Much happier on Promacta

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Nplate loss of response, antibodies to Nplate? 1 week 6 days ago #67208

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Thanks MrsB. A year isn't very long. I wish Promacta worked for me. Glad it does for you. Nplate has been great for me. Hopefully this is just an inexplainable phase and I don't have antibodies to Nplate.

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Nplate loss of response, antibodies to Nplate? 1 week 6 days ago #67209

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I have had to increase my dose of Nplate. I have been on it weekly for 5 years. In the beginning 3mcg kept my counts to 50, now I'm up to 5mcg and my counts are generally in the 20-50 range which is safe for me. Interesting though when I was on Promacta I became more responsive to it over time. Counts climbed to over 100 on 50mg, so I was able to lower the dose to 25mg. But I had difficult side effects so switched to Nplate.

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Nplate loss of response, antibodies to Nplate? 1 week 6 days ago #67210

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That is really curious about Nplate vs Promacta. It's good hear about you having to increase Nplate dose. Perhaps that's what's going on with me. Was it a gradual increase or did you suddenly have to increase it by a lot?

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Nplate loss of response, antibodies to Nplate? 1 week 5 days ago #67213

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I have been contemplating that if something opposite is possible? That is, for someone being on these drugs, is it possible that one, after couple of years of receiving them, is able to totally discontinue them?
I just wanted to try reducing my dose and see what happens, but I'm afraid and sometimes (say once a month) I have nosebleeds, but never check platelets when I guess I'm low, LOL :)
And conversely, I sometimes feel somewhat lightheaded or experience very mild (and short lasting) pulses of headache, which I guess might be due to high platelets, but tests have not ever shown more than normal platelet count (and MPV is on 11 or so I guess).

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Nplate loss of response, antibodies to Nplate? 1 week 5 days ago #67218

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Poseymint, what side-effects turned you away from Promacta?

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Nplate loss of response, antibodies to Nplate? 1 week 5 days ago #67222

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Lman, I rarely hear about Promacta or Nplate losing efficacy, but I have often heard/read about people who take these drugs and end up in remission.
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Nplate loss of response, antibodies to Nplate? 1 week 5 days ago #67227

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bh2- I gradually increased Nplate. But it didn't mean I was losing responsiveness to it completely, things just change. I don't believe its antibodies in my case.

In 2017 I was able to lower my Nplate dose. I was on 495 and 452- the nurses kept switching the doses back and forth trying to overcompensate for counts they thought were not right. They were actually creating wild swings. My counts would be 76 then 3 and 80 then 5. Every time my dose was changed my counts would crash. Even an increase could make my counts crash. So I told my doctor I wanted my dose left alone at 452. I wanted the dose to remain constant and let my immune system do the adjusting. That really worked and my counts leveled out around 50.

So then I caught bronchitis and my counts shot up to 395- wow. I skipped my dose that week. Next week my counts were back to 50. My doctor wanted to give me a dose and asked me what dose I wanted. (hes nice that way) I said I wanted to lower my dose so we decided on 412 which is 5mcg per kilo of my weight. And to our surprise that lower dose worked! It kept my counts at 50 for a long time. Now my dose is 408 because I've lost a bit of weight but its basically been the same lower dose for a couple years.

Remission- yes, a number of people have gone into remission after being on these drugs for a while. Sometimes their counts slowly begin to climb and they lower the dose until they are able to quit.

My side effects from Promacta were unusual. I had brain fog, memory lapses, headaches- trouble with thinking and memory. I quit Promacta 4 times due to side effects and each time my counts held for a while, then slowly drifted down over a period of a couple weeks. so that was nice.
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Nplate loss of response, antibodies to Nplate? 1 week 4 days ago #67235

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Thanks.
Look at here. almost 2/3 of people on Romiplostim have successfully discontinued it, within 10 years, and of course before they start romiplostim, they had tried other drugs as front line, so they had chronic itp. But, the problem is that the number of patients in this study is too little, and I have not found any other article examining itp patients being on nplate for a long long time (more than 5 years) and also consider if they could stop it.
2/3 is a good number :)
UPDATE:
here's the link which I had forgotten to share : www.ncbi.nlm.nih.gov/pmc/articles/PMC5479599/

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Nplate loss of response, antibodies to Nplate? 1 week 4 days ago #67236

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Thanks Poseymint. I agree that reacting to each weekly number by raising or lowering dosing of Nplate is not helpful. I am fortunate in that my hemos have thought it best to keep Nplate dosage stable. It's worked well.

Lman, 2/3 is great. There is hope! :)
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Nplate loss of response, antibodies to Nplate? 1 week 4 days ago #67237

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b2h, Just put the link, I had forgotten to do so!
by the way, it seems like Neve is doing fine! I have not heard from her for a while.

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Nplate loss of response, antibodies to Nplate? 1 week 4 days ago #67241

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Lman, the last paragraph mentions '~30%' as the remission figure. Where are you seeing 2/3?
The wording is confusing. I take treatment 'not indefinite' to mean remission.
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Nplate loss of response, antibodies to Nplate? 1 week 4 days ago #67243

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Hal, do you see figure one? eventually around 60 percent are able to successfully discontinue romiplostim.
That makes sense, take a look at this well known itp article : www.bloodjournal.org/content/97/9/2549.long?sso-checked=true
where it says: " Another factor that might contribute to the discrepancy with other studies is the long follow-up that increased the chance to observe late responses. In line, in 10 of 15 patients with treatment failure, Picozzi demonstrated spontaneous normalization of platelet counts after an average of 7.5 years"
I think some people will achieve this remission, and perhaps it's regardless of the maintenance treatment they are receiving.

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Nplate loss of response, antibodies to Nplate? 1 week 3 days ago #67246

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Nplate loss of response, antibodies to Nplate? 1 week 3 days ago #67248

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I Had seen it before, but as I see In the charts, follow up is at most 3 years?
And Anne, that was why I had asked you about have you got better during these years?
This might not be very scientific article: www.self.com/story/6-things-you-should-know-if-you-live-with-chronic-itp
But, there, Doctor Naik (which from John Hopkins center) claims this :
"Most adults with chronic ITP see their symptoms become stable within five years of getting diagnosed, according to the Merck Manual, and some people even spontaneously recover. But if that’s not you (yet), remember that although chronic ITP isn’t curable, doctors do consider it to be a very treatable condition. “[ITP] tends not to be this very dramatic thing for your entire life,” Dr. Naik says. “It does get better.”
Related"
She had been conservative on saying that, but her reference was www.ncbi.nlm.nih.gov/pubmed/16885043 .
My question is that, does getting better, or having stable symptoms really means that you are able to discontinue any treatments? and still be +10k?
Also here, interprets that : www.msdmanuals.com/en-gb/professional/hematology-and-oncology/thrombocytopenia-and-platelet-dysfunction/immune-thrombocytopenia-itp
in the prognosis part, again with reference to www.ncbi.nlm.nih.gov/pubmed/16885043 , it says :
"In adults, spontaneous remission occurs in 30% of patients in the first year, and up to 75% of patients improve within 5 years (1). "
So again that is my question, if improvement means that one is able to discontinue all drugs and remain +10k ?

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Nplate loss of response, antibodies to Nplate? 1 week 1 day ago #67255

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Lman, after reading closely, there are two numbers given. The first is 12 of 43 patients (28%) and is the remission rate. Then, further down, 19 (of 43) patients (44.2%) who continued to need Romiplostim after up to 10.4 years. This second number is shown in Figure 1. What is behind the different numbers is confusing.

As I understand, the (100-44=) 56% includes treatment discontinuations for reasons other than Romiplostim treatment response. For example, if one took Rituximab or had a splenectomy, while taking Romiplostim, then those folks are in the 56% and are not included in the 28% number. Also, if there was ITP relapse and Romiplostim lost its efficacy, then those folks too are part of 56% population.

Make sense?
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Nplate loss of response, antibodies to Nplate? 1 week 1 day ago #67257

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Sad reading about the deaths in those articles…

“…remission in patients with newly diagnosed or persistent ITP before it becomes chronic”

Does anyone think that with a particular treatment, ITP will not become chronic?

It is interesting how and when remission is talked about by various doctors and patients. I am surprised that a number of newly diagnosed people are talking about how to go into remission after only a few months. Then there are many others who have had ITP for years and their doctors are concerned about maintaining rather than achieving remission. There are all these stages (physical, emotional, spiritual) to chronic (or any) illness....

Of course remission would be great for anyone. I'd be really happy to not have to go to the lab and infusion center every week or two, but there doesn’t seem to be a particular formula for it and more needs to be known about ITP and why certain treatments work for some and not for others.

Anyway, onward we all go the best we can.
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Nplate loss of response, antibodies to Nplate? 6 days 2 hours ago #67264

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Yeah Hal.
But how do you interpret Picozzi study and Thomas Sailer study which both had around 2/3 of patients achieving remission?
Do you think the drug matters?

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Nplate loss of response, antibodies to Nplate? 2 days 10 hours ago #67288

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Lman, not familiar with those studies. I guess my point is that one has to pay close attention to what a study's author is trying to present.

I like the 28% remission number as it aligns with my very cursory understanding of the ITP population sizes of the four antibody types/rows. Roughly:
row 1 - 25%
row 2 - 20%
row 3 - 20%
row 4 - 20%
row combination - 15%
total = 100%
My rough calculation of remission via TPO-RA treatments only is: All of row 2, which is 20% of the population, plus 5% from row 1 would make 25% - which is very close to the studies 28%.

If you are asking Nplate drug verses Promacta drug, I haven't seen a difference. A row 2 response goes into remission with either drug. Similarly, if one has a splenectomy, that doesn't influence the outcome too. A row 2 response will go into remission with or without a splenectomy before hand. No difference.

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