Nplate was failing on me again so I started on Doptelet (avatrombopag) at 20mg daily on 10/24- doc insisted on one last Nplate shot on 10/23.
Here's the skinny-
10/23- 227, Nplate @ 80, Dopt. next day
10/30-394- should have held but doc never read the dosing so continued 20mg@1x daily
11/6- 910- stopped Doptelet
11/19- 139- restarted Dopt@3x week
11/26- 10- back to daily Doptelet
12/10- 679. WTF?! Stopping again.
Anybody got any thoughts? I'm planning to hold til below 200 & then try 4x weekly just because why not? My doc's too stupid to read the dosing instructions at the outset and now he says "follow the chart"- we were following the chart when I went from 139 to 10.
Actually the Nplate worked for me for almost 10 years, but last year it failed and I did several near death things but then they decided to try it again and I got almost another year before it started being hinky again. Rather than wait for another fail I switched b/c I did the old AKR501 study nearly 15 years ago and it had worked. Just trying to tweak the dosing now. And saying a lot of conflicting prayers.
The Nplate had begun to fail again. It crapped out last year after 8+ years of consistency and all hell broke loose so when that pattern started to repeat we switched, hoping to avoid this roller coaster.
I was in the study about 15 years ago and and it worked beautifully and consistently. This times kinda wack. After the initial getting too high and holding it, I went from 521 to 139 in 4 days, restarted at 3x weekly and dropped to 10 in one week, went back to daily and hit 130 after 1 week and then a week after that, 679. Held it a week, 503, held it a second week, 8. That was 2 days ago. Now I'm trying 4x weekly. Not a very happy camper.
I guess I was luckier than I realized when they gave me financial aid. I'd be doing without and waiting to bleed out if not, Nplate is the only other med to work for me and I have literally tried all the others. And Nplate eventually failed.
Oh what the..? So I was at 8, we restarted me at 4x weekly & one week later today I'm 9. Going back to daily & getting my count checked 2x weekly. We'll see what Friday brings, but today's pounding headache is getting old. It's not hospital bad, but enough to be scaring me.
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
Thank you received: 546
I have noticed that doctors are more bothered about low counts than patients.
I recently had a massive crash with a cold. Count down to 7. Took a quick boost of pred to get it up. Of course once that was out of my system it started dropping again. At 17 Haemo says to me she was considering increasing my Eltrombopag dose from 50mg to 75mg. I declined that offer as previously after crashing over the next couple of months it had found its own way back up to the 80s without any dose changes. The moment of truth will be Monday when I see her again. Hope I'm right.
How about getting counts out the gutter by taking it everyday for few days, then go to every other day? It's like you need one dose when counts are low and another dose when counts are high/higher. And so goes antibodies to Megakaryocytes. It's an all or nothing response.
I think I'd be learning how to cut pills in half. Sounds a bit like skipping any day may be eliciting a crash.
Wackier day by day. I'm getting counts 2x weekly, these are the latest- date, count, dose-
12/10- 679- 0mg for awhile
12/17- 503- 0mg still
12/24- 8- well crap. Going to 4x weekly
12/31- 9- back to daily
1/3- 48- staying w/daily
1/7- 359- going to every other day
1/10- 634- holding
1/13- 732- ? Still holding
I'll get it checked today, I'm on vacation so I'll swing by the hospital later
Well, on Tuesday my doc said I had an 11 count and I could either do exactly what he says- the same thing that's failed 3x already- or find a new doc, so I told him I know the definition of insanity so rather than doing the same thing again and expecting a different response, a new doc it is. Thurs I saw my. PCP and I'd fallen to 11. My headache, 10 days old, started getting worse today so now I'm at UVA being admitted. Meanwhile I reached out to Dr. Bussel and he sent his dosing guidelines, which I've given to the ITP Specialist here.
I was reviewing video of this summer's PDSA conference. It was stated that Doptelet is about 4 times more potent than Promacta. So 20mg would be about 80mg of Promacta. Hmmm. I wonder if there is anyone with ITP that doesn't respond to perhaps a 40mg dose of Doptelet.
On headaches. From my experience, a little bit of Aspirin goes a long way in stopping high platelet count / TPO-RA induced headaches. The earlier one treats, the better. Half of one Aspirin at the first sign. Then another half pill after an hour if things aren't better, is the way I play them.
Today l went to the docs , which I do every Thursday,I've gone from one a day to alternate doses of two and one never did better than 29k ,so this last week ,I tried 40mg a day ,I could see some visible changes so suspected a higher platelet count which was 278km , doc called told me to take some children's aspirin . I haven't had those kind of numbers for years.
Pemp1, twice the dose but TEN TIMES the count. Oh my gosh. How to work with that?
Also at the PDSA conference, they mentioned that it takes less time to get a full response than the normal minimum of the two weeks - as it does with Promacta and Nplate. Don't think they gave a specific number of days.
I hope you and Lizabeth can figure how to get counts a bit lower.
I'm taking one 20mg only on Mon., We'd., Fri., starting maybe 10 days ago? I had gone all the way to 1217, the drop in dosage was over time, and last Tues. I was at 560. Unfortunately I get my labs done off-site from doc & they'll only do them every 7 days, & then will only fax results to doc but not tell them to me so I'm always last to know anything, but for now I can only be happy I'm neither over 900 nor under 9.
I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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Hi when you say failing again what do you mean? Want to see if it’s the same I have been on nplate ten years now on and off but never consistent Im usually either in the 100s with migraines or 5 or under I just wanna be about 50 but cannot get there but the last 2 months the highest my counts have been were 23 which I would be ok with but Every other times I’m 5or under I’ve seen results like this with doptelet before and it scares the hell out of me because I had a stroke when I started nplate when my platelets went over 50”
Just thinking out loud.
When I went to the PDSA conference last summer, one speaker was talking about mixing one TPO-RA with another. At the time, I was thinking, what in the world? Why would anyone want to do that? What good would that do?
Well, now that we've seen a couple folks have crazy responses to Doptelet, I think I now understand. How about if one takes one 20mg pill of Doptelet everyday, and then takes X amount of Promacta along with it. Perhaps with both drugs, dosing can be more precise, and these wild platelet counts wouldn't happen?
Hello fellow dosers, things have took some changes for me ,for one thing it's not so easy getting my blood checked with this virus going around .although I know I'm running on empty what with all the blisters , bruises and such , taking two a day was just to much for me , taking one every other day got me to 55k , then I thought I would copy lizabeth and skip weekends big mistake , turned to heavier doses of prednisone ,and find my self sitting here with blisters ,bruises and spots. I remembered the very first day I took doptelet I woke up with the same conditions ,from there on though things improved , taking 1 pill every day , so I took one tonight then will take one monday and back off on the prednisone . Will keep updated , take care fellow lab rats.c
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