romiplostin nplates

[catt1]

hi i have had cronic itp and have held a average platlet count of below 30 for 12 years had spleen removed in 2002 to no effect have tried azathaprine steroids ciclosporin and immunoglobulin all with little or no effect after a drop down to 3 and a hospital admission being given a platlets transfusion wich brought me up to 78 then drop to 12 over night i suggested nplates to my consultant after researching them myself he agreed and have just had second injection and am supposedly responding well i say supposedly because i have my own concerns regarding the information i am being given i do feel a little bit like a guinea pig if i am being honest am after adivce from anyone else on nplates regarding longer term side effects cheers

[salmagal]

Hi there have been on nplates (romiplostim)since August still havnt found a steady balance I had count of 327 last Thursday so didn't have the injection then by the Monday had crashed back to 2 have taken injection on Tuesday so counts at 26 go back to have blood tested on Monday to see if I need injection on Tuesday I am so grateful to be responding to this treatment but find it unstable don't seem to have any bad side effects

[sailor]

Hi Catt1. If you look back through the posts, you will find others who have been on nplates. As with all medications and ITP, what works for one does not work for another, as I well know from my own history. Look on the positive side, they say you have reacted well so far so stay with it, be a guinea pig if you like, but if it works, do not knock it and keep us all posted of developments. You are not alone. Take comfort from Salmagal and her experiences. Good luck.

[trev1679]

I have been on Nplate for a year and a half, I am still having unstable counts. There is a pattern to my response to the treatment.

I'm given a dose of nplate which my system responds to, my count then increases to around 100 for around 6 weeks before dropping back over a period of about 4 weeks. They then increase the nplate dose and the cycle begins again. I was on 1250mg of nplate my count then dropped to 13. I was then put on 40mg prednisolone as well as nplate and my count on Thursday was 1499! My consultant now wants me to try a combination of lower dose nplate(750mg) and 20mg prednisolone. We'll see how that goes.

Nplate doesn't seem to provide consistency - which let's be honest is what we are after. I can cope with a lower count if it is consistent. It is the uncertainty that is so difficult

[PKScott]

Hi Catt1,

I've always felt like a walking science experiment. N-Plate worked for me. But it didn't give me the big results as it has given others. My bones ached termendously throughout my treatment and after the 4th treatment/injection, my counts dropped to below 10K. Due to the side effects and the fear of the drop, I stopped with the treatments. They never recovered to my normals. Before N-Plate my normals were 50K-80K without treament and after N-plate my counts have been 30k-50K. I don't know if the normal drop was due to N-Plate or due to to something else... IDK. I have learned that medicine is not an exact science, so yes... human guinea pigs we are... but it is by choice...

Trev1679,

I like your combo treatment and it something that I have beeen discusssing with my hemo as well, if I drop below 20K, (I'm at 33K now. A double sided approch. N-Plate will affect the production of the platelets in the bone marrow and the preds will affect the destruction of the platelets in the immune system, yes? I watched the video that Anthony Heard Posted on this site and really liked the information that it provided and did a lot of research based on the information. I don't care for prednisone side effects and would probablly try Cell Cept, which has good results with little side effects for me, to suppress my immune system. IDK... It's all trail and error we will see...

Best to all,

PK

[Hidden]

I have been on romiplostin for 7 months. I got into a pattern of having my dose increased and my count would up to 100 and something for a few weeks then slowly drop back down over a month to 20 something before being increased again when i got to 360 dose my count stayed in the 150 range for 8 weeks and so has just been reduced.as I have been advised on romiplostin platelet count should be kept between 50 and 70. So fingers crossed it will work i have never had any side effects. But i am scared about the possible long term side effects but for the moment i self inject at home and have blood test every 2 weeks and see doctor every 6 weeks so at least i have a bit of a life back.

[poppy5 in reply to Hidden]

Hi I'm trying romiplostim , why should levels only be kept between 50-70, this sounds low. I thought average was 150 to 400? Thanks

[Hidden]

It took me several months to get stable on Nplate too with keep dropping back and raising the dose, until after 7 months or so I found I had to drop the dose back down again and am now on a tiny dose self injecting once a fortnight with blood tests every 8 weeks. I have a count of between 50 and 70 which is ideal on this drug, you wouldn't want any higher. So it works for me.

[NickyD]

I have been on Nplate for nearly a year but have been taken off it because my count was too erratic. When given Platelet transfusions they only lasted 24 hours. My count is by no means stable and I said to my consultant last week that if I had a blood test every day my count would be different. Please dont feel like a guinea pig, you are going through the motions of finding out what is right for you. I have had so many visits to hospital this year it is a surprise that I have had any life away from it. Hang on in there and keep positive. I know what it is like to yoyo from low to high - one week my count on Monday was 2 and on Friday was 965. I too had a splenectomy and it didnt work either. Trust me we all know and understand your frustrations.