Siponimod delays

Hi all. Has anyone got any experience of delays with Siponimod? My neurologist cleared me for receiving the medication a month ago but I’m still waiting to hear from the MS nurse about the blood tests required first. Is this a normal delay? It feels a little like a progressive disability is being left to progress

Hi, I was told I should start siponimod in March…I actually started in June!

It may well be the Covid delay, but could just be the normal overloaded NHS delay. Hope you get your appointment soon.

Thanks. It’s obviously a bit slow to introduce. My neurologist is only at the hospital one afternoon a week so it’s not possible to speak to him. All responses greatly appreciated. How are you finding it?

Hi I’m on mayzent. I’ve been on it now for about two months. It took a good couple of months for the nurse to come and take blood and awhile after that before it was all set up. I know how you feel I was getting so anxious thinking what’s the delay if this drug can help me I want to start it ASAP. Get onto your MS nurse and she should be able to give them a push. Take care x

To be honest it was the hospital and all involved there that was the problem with my situation, the IQVIA nurse has been brilliant, she was the one pushing.

I think because it is a new tablet and I was the first to go one it in my county all the paperwork and procedures took longer than expected, and also covid, not everyone was at the hospital or working at the same time and notes were left or missed and it was just one delay after another.

The good news is that I have no side effects - to begin my blood pressure went up and then down, but has since settled back to normal - I borrowed a BP machine from work to check for the first 2 weeks although it is meant to be done by your team, bloods are taken regular,but again mine was late. Now waiting on an eye test appointment from the hospital.

The bad news is that I think I have the “MS hug” at the moment which I haven’t had before - so maybe a relapse? Still its early days so we will wait and see.

Hope all goes well with you

Thank you for all your support. I will just keep pushing and waiting. The problem seems to be that as the first in the county to be prescribed the medication there is nothing in place to start the process.