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Does Romiplostim dose need to be increased while on treatment? 8 months 2 weeks ago #70871

  • Lman
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Hello, fellow ITPers.
hope you doing fine. I just stopped by to ask a question that has perplexed me for a while.
Just a quick recap, I started nplate 2.5 years ago. At the time I started with a full vial, almost 375mcg ( also that extra 125 mcg considered). I self administer it from the start. Ok. In the beginning, everything was fine and on that 4.3 mcg/kg I have been always above 150k. Maybe at that time I should have tapered it but I didn't, but I used to skip 2 or 3 days on each shot. Everything was fine on the monthly tests. Then, all of a sudden, after a short trip, without any ailment I haven noticed, I had GI bleeding with a count of 10k. Afterward, I increased the dosage by 1mcg/k ( so after a year I was on 5.3 mcg/kg approx). in the second year, counts were in +80 ranges but there were 2 occasions where I had 30-40k. at that time, without telling anybody, I increased dosage a bit (by 2% of the whole 2*375=750, that is 20mcg) and everything was fine for the next couple of months. I mean again I had good counts. Interestingly my previous month's count was 130k but yesterday it was 30k and I was horrified and increased again. this has made me fearful that what should I do? I think normal fluctuations are a natural part of nplate and I shouldn't have done it (also my doctor doesn't have much information) so I should ignore these 30-40k monthly counts if previous counts have been high and test the next week and keep the dosage constant?
I should mention that in all occasions where I had a low count (after that bleeding) the minor 20mcg increase has done the trick and counts went +80k while the leaflet says if you are below 50 just increase a whole 1mcg/kg. I'm reluctant to do this (although I did it yesterday) since I have the feeling that the more you increase, the more will be the possibility of needing further increase. Maybe it's just a transient fluctuation that I should test the next week on the same dose? Now with this occasional increases, I'm now on 5.4 mcg/kg...
I also remember other people complaining about the need for a dose increase.
Also, someone here would say he would taper if he would get +100k, but I don't have the guts to do so because of fear of bleeding, and the transient nature of the counts. Last month I was 130k and this month 30k. Had I tapered last month, who knew what would have happened?
I should also mention that thanks to the pandemic, I have gained an extra 10kg. I once asked my doctor should I increase the drug dosage according to my new weight? He responded not. But could this be a possibility to my previous count? Increased weight and constant dosage? I personally think not because fat has not much to do with bone marrow and platelets.
Thanks.
P.S: I know Promacta gives you much stable count but at this time I will not be able to access it.

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Does Romiplostim dose need to be increased while on treatment? 8 months 2 weeks ago #70881

  • mrsb04
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  • 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
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I gave up on Romiplostim after a year. My counts were all over the place anything from about 20 to 150. I had to cancel a planned surgical procedure at short notice when my pre op bloods showed a count of 6 where as the previous week count was over 90. Shame you cannot get onto Eltrombopag.
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Does Romiplostim dose need to be increased while on treatment? 8 months 2 weeks ago #70894

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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Don't assume Promacta would stabilize your count better than NPlate. I found a couple of small studies that showed people who switched from one to the other didn't gain anything from the change.
I've never had good stability on NPlate myself. Oddly though, I have much more stability now that I'm taking 1 mcg/kg versus when I was taking as much as 8 mcg/kg. I can't explain that, but a lower dose seems to work better for me than a much higher one.
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Does Romiplostim dose need to be increased while on treatment? 8 months 2 weeks ago #70900

  • mrsb04
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  • 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
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My counts have been much more stable since switching to Eltrombopag.

I'd be interested to see those studies please midwest.

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Does Romiplostim dose need to be increased while on treatment? 8 months 2 weeks ago #70901

  • Lman
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Thanks ladies.
As I recall, Novartis had claimed (with some statistics) that those who switched to Revolade had a much stable count. I think it makes sense since it is daily, compared to weekly. But a good point about Nplate is being once a week. You think about your drug only once a week.
By the way Janet, how did this happen? You mean you were on dose 8 mcg/kg and counts weren't good (say 60k) and you suddenly switched to 1 mcg/kg next week? I'm really terrified when thinking about dose reduction, even when I get good counts. When it comes to hospitalization, I feel like a mad dog. This is my personal theory that when you can cut the dose, you should. Unless you end up needing more.

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Does Romiplostim dose need to be increased while on treatment? 8 months 2 weeks ago #70902

  • midwest6708
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Here's one link, mrsb... pubmed.ncbi.nlm.nih.gov/28759125/
As I said, it's a small study, and only 3 of the participants switched in an attempt to stabilize counts. Of the 3, one had no response to the replacement drug and 2 remained unstable. It was enough to convince me to just stay with the drug I know rather than take on the expense of the oral med and perhaps have it not work anyway. It might have. All I can say is there are no guarantees.

Lman, my story is long and complicated. I'll try to keep it condensed. I responded to NPlate from the beginning, but it worked too well at producing counts well above 100. Then mysteriously I would crash below 20 every four weeks, in a regular cycle. My doctor didn't want to ever decrease the dose in order to reduce the high counts because of the inevitable fourth-week crash. I wasn't comfortable at all with the clot risk, so after a couple of years, I agreed to take Rituxan. That experience was a disaster. Not only did the Rituxan cause serum sickness, it led to wild instability that I'd never seen before. I was literally at 661K one week and 2K the next. Another week I was at 555k and the next 2k again. It was very hard to know what to do at that point. NPlate seemed needed, but at what dose? I immediately went from 325 mcgs/week to 150, then 125. Once at 125, count stayed relatively safe in the double digits with occasional high spikes. I held that dose for about a year, until last autumn, dropping gradually until I'm now at 60 mcgs/week. It's a little less than 1 mcg/kg for my weight. While I still don't have a consistent count at the desired 50 from week to week, it's no longer been crazy high nor crazy low.

Of course, I can't advise you how to proceed. All I can say is that when my counts would swing very low on that 4-week cycle, increasing the dose that week always made things worse. With my doctor's agreement, I learned that holding the dose steady until the count caught up to it worked a lot better than increasing the dose to accommodate that one low count.
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