Romoplostim dose

[salmagal]

Hi attend ITP clinic every second week get blood count done every week I'm given enough romoplostim home so that I can phone for result on alternate weeks count was at 76 after 500 dose after phoning today count at 176 phoned in spoke to an auxiliary who said spoke to a nurse who spoke to a doctor came back to me and said to repeat same dose as last week I'm wondering is this to high a dose for this count can anyone offer opinion many thanks Sarah

[trev1679]

Hi Sarah

A difficult one to answer. Romiplostim is based on body weight. Dose given is grams per kilo. If memory serves the maximum is 10mg/kilo. I was on Romiplostim for a year before it stopped working and as a man who is 6 foot 10 I was on 1250. However it sounds like it is working. The aim of romiplostim is to maintain a count of over 50.

It was my experience that it takes about 2 weeks for the results to show from dosage to full impact on platelet count. At one point my count soared to 1499. I didn't have romiplostim that week 2 weeks later my count was 4. As ever the only certainty with ITP is uncertainty.

[salmagal in reply to trev1679]

Thanks trev for answering my question helps enormously

[Hidden]

Protocol says that if the count is higher than 150 two weeks in a row, then reduce the dose. So presumably if it's high next week they'll get you to reduce.

[salmagal in reply to Hidden]

Hi Camdengirl thanks for info my count was at 76 last week and 75 week before been on this since August it's so unpredictable as I've been using 250 dose for long time now find I'm having to use 500 dose to keep safe thanks again sarah

[salmagal]

Thanks for reassurance that's why I love this site thanks again Sarah

[rjsmyth]

The only way I can get consistant numbers around 50 is to inject weekly - we have tried 10 days/14 days and the count becomes too inconsistant. I am on 250 (one phial) - started on 500 and count was around 165.

The idea is to keep as close to 50+ on the least dose.

[Hidden in reply to rjsmyth]

Do you mean you started on two whole vials and reduced to one whole vial? I have never used a whole vial. I started on 60 mcg, increased to 120 mcg, 180 mcg and so on until I got stable and then reduced and now I'm back down to 60 mcg which is a tiny bit of one vial and my count is round about 50 most of the time.

[NickyD]

Hi Salmagal When I was on Romiplostim and my count went up beyond 400 I was not allowed any further doses until it came down. But when it came down it dropped to less than 10. The Romiplostim did not stablise the count so I was put on prednisolone and Romiplostim together but that also did not stabilise the count. So, now I am off both. I took many months to realise that no amount of changing the amounts and the frequency was going to do any good. Just hang on in there and keep trying. NickyD

[salmagal]

Will do its just so frustrating I seem to be like you NickyD all over the place it's such a tying treatment you can't plan any holidays due to having to check count every week and because I feel ok I want to travel as hubby and me are retired I've booked a flight for hubby to go to Spain to visit family I will see consultant this week and ask again if I can go which he refused due to treatment if he's says no means I have to let hubby go alone and book his flight home thing is because my clinic is in oncology clinic it makes me feel I shouldn't moan as at least I'm safe thanks NickyD will keep trying to hang in

[healthissue]

i have 120micrograms. weekly. i recieve a months worth of injection at same dose and get tested once a month count been in 200 and 300. my haemotologist wont reduce amount but Im going to insist this time as i know my count only needs to be 50. i believe Im one does away from being on lowest dose. i tried many other treatment never really got upbove 4 so am really happy with this treatment although would love to be drug free. good luck to you all

[rjsmyth]

The reason I need 250micrograms is because the dose is based on how much you weigh.

[Hidden]

Yes it's on weight, I weigh 60 kg so my lowest dose is 60 mcg.

[Robert1959]

Yes the dose is based on 1mcg per kg and so for me weighing 90kg a Level 1 dose was 1 x 90kg = 90 mcg. The largest dose I had was a Level 8 dose which worked out to be 8 x 90kg = 720mcg. The easiest way to then work out the liquid volume for the injection is to take the mcg amount and multiply it by 0.002. Therefore once the water had been added a 720mcg dose = 1.44mls.

I think that the packaging of the Nplate is very confusing as the 250mcg vial actually contains 375mcg and the 500mcg vial actually contains 625mcg - the 250 and 500 relates to the concentration mix once the water has been added. For a while I seemed to get a new nurse for each of the weekly injections and I constantly had to assist them with the calculation - it got to the point where my specialist told the nurses just to follow my advice!