romoplostim

[salmagal]

Hi started romoplostim with count of 1 on 12 jul only put count up by 1 which gave me count of 2 on 19th jul had higher dose of romoplostim go back this week 26th jul is this usual for this drug or could it be i have no response to it

[lindylou45]

Hi my daughter started on the lowest dose of Romiplositn with no effect. Her consultant then decided to give the maximum dose he could and her count jumped, has since had two more injections at lowest dose and platelet count has stabilised to normal now, her last injection was in May. So for her Romiplostin seems to have worked. Hope this helps

[salmagal]

hi there lindylou so appreciate taking time to answer gives some hope thanks salmagal

[NickyD]

Hi salmagal My experience of Romiplostim is very different to yours. With the Romiplostim injections my count has gone up from 2 to 965 in a week. It has been well over 1000 on times, but will come down as quickly as it goes up. When the count crashes I get the petechiae and the purpura and end up bleeding and having to go into A&E for platelet transfusions. So I am VERY responsive to it. BUT my count has not stabilised. Consequently I am being weaned off Romiplostim and am going on Micophenolate. So, having thought that Romiplostim was the answer, I am now back to trying another drug to see if this one gives me the stability I need. I am on a regime of trying different doses to see if this one works - I have been on the new drug for less than two weeks so it is early days yet. We are all so very different with the different drugs that can be used. Hang on in there. NickyD

[salmagal in reply to NickyD]

Hi NickyD sorry to hear romoplostim didn't work for you really hope you have better luck with new drug you have not had an easy time i have been about 3 weeks with count down to single figures will let you know how i get on this week

[NickyD in reply to salmagal]

Let me know how you get in with the consultant tomorrow.

[salmagal in reply to NickyD]

Hi NickyD just back from clinic today counts have only went to 4 so have had the dose upped dont really understand how these doses work but have to keep going and hope for better result next week hope you are doing well with your treatment

[NickyD in reply to salmagal]

The max you can go to on Romiplostim is 10, so you have a way to go to try higher doses. There is also a time delay to factor in when you have Romiplostim. My body takes about 4 - 5 days for the effect to kick in. My count has been stable for three weeks - give or take a difference of 60. I have not been this stable for nearly two years. When is your next blood test?

[rjsmyth]

My count was 13 when I started with 2mgm per kilo of body weight of NPlate - a week later count was 23 - dose increased to 3mgm - week later 120 - continued dose of 3mgm - week later 230 - decreased dose to 2mgm - week later 160 - currently waiting to see what injecting 2mgm fortnightly produces. I was told by Dr. Drew Provan that the point of taking this drug was to obtain a count over 50 (considered to be a safe count) injecting the least possible amount of the drug thus avoiding (or delaying) any long term side affects.

Prior to Nplate I had taken Prednisolone, Dexa, IViG, Azathioprine, Rituximab and MMF all with little or no effect other than to make me feel absolutely terrible. In the end I took nothing for two months and my count stayed in the teens without any bleeding but with some bruising. The worse thing for me about ITP (other than not being able to ride my motorbike whilst my count is low) is the dreadful tiredness and fatigue - a good deal of which has gone away since starting Nplate.

I had to battle to convince my Hematologist that the guidelines for being given Nplate without previously having had the spleen removed had changed to just failing one previous treatment. My local Private Care Trust had refused two of her previous patients access to Nplate based on the old guidelines.

Thus far I have had little or no side effects from Nplate other than to feel a bit fluey a couple of hours after the injection.

From my understanding (I am not an expert but having this condition focuses the mind somewhat) you can take a maximum of 10mgm per kilo of body weight of this drug safely. Sudden dramatic increases in platelet counts can occur and have to be dealt with swiftly because of the danger of unwanted clotting.

Good luck

[rjsmyth]

Todays level after two weeks was 67 - so fortnightly injections for me at the moment.

[salmagal]

Hi rjsmyth thanks for your help letting me know how you are doing as it really makes a difference i go to see my consultant tomorrow hoping for good result i didn't feel to good on sunday and monday dont know if this was due to romiplostim but feel better now will keep you updatet thanks salmagal

[Hidden]

I have been on romiplostin for three months. I started on 1 per kilo and have slowly been increased to now 4 per kilo. My count was previously stuck on 1. It fluctuates quite a bit but has ranged from 24 to 143 but fingers crossed it will carry on working. I am injecting at home now but still have to have weekly bloods. Good luck with it.

[salmagal]

hi efd106 so glad to hear your count is good i am just back from clinic today counts have went from 2 last week to 4 so was given higher dose im not to sure how they work out the dose i thought consultant said they were giving me 50 mg is this wrong it was def 50 something hope your count continues to keep stable

[HappyHopeful in reply to salmagal]

How are you doing now Salmagal? Did Nplate end up working well for you (I hope)?