Romiplostim

[salmagal]

Hi all had checkup today and so happy to say my count is at 130 at least I have a response now just to be hoped it doesn't go to high

[sailor]

Good news. Keep positive for the future.

[salmagal in reply to sailor]

Thanks sailor for encouraging comments

[rjsmyth]

Good news - after another fortnight my count is 130 - going well for me. Still get fatigued though!

[salmagal in reply to rjsmyth]

Hi rjsmyth glad to hear your count is up I'm going down to Great Yarmouth in a couple of weeks to in laws a bit apprehensive as I have to learn to inject myself but am willing to try as it will lift some of the restriction from taking this injection consultant said they would be able to give me the dose away with me so with H.A.P I'll manage it

[Hidden in reply to salmagal]

I find injecting myself better than when they do it, I do it in the abdomen area and it doesn't hurt at all whereas they used the arm and I found that painful. Good luck.

[rjsmyth]

Likewise - no problem injecting - the needle is so thin it is painless.

You'll need to take the dose away in a cool bag as Nplate needs to be kept in a fridge.

[ungroupdeitp77]

I am so happy I found this group ! can anyone tell me if they have any side effects with the romiplostim injections ? I've been on them for 1.1/2 year my platelets have just reached 44 this week by the muscles & bones ache is difficult to bare..so much so I want to be weaned off the drug..I'd really appreciate a reply..Many thanks ! Warmly Violette

[lindylou45]

My daughter had her last romiplostin injection 3 months ago and has had good platelet counts since. Unfortunately she was rushed back in to hospital on Friday with a platelet count of 4, she has been given Iv immunoglobulin and a high dose of romiplostin but unfortunately they think this time she has had a reaction to it ( rash and high temp) so they are starting her on eltrombopag so after such a good result from romiplostin last time we seem to be back to square one trying to find a suitable drug to help her ITP.

[Hidden]

Is the rash and high temp not due to the immunoglobulin rather than the romiplostim? Just wondering. It would be a shame to stop using a drug when it works so well.