Has anyone any experience with Mayzent/Siponomid?

Hello everyone
This is my first post as ‘Daffodil’, having just re-joined the new forum. I did use the forum a few times over the years but not since this latest version of the forum was introduced.

I just wanted to ask you of you lovely people if anyone had tried, or decided not to try, Mayzent/also known as Siponomid?

I had a neuro consultant appointment recently, MRI scans and a subsequent conversation with the consultant and I have been told I am eligible to have Mayzent prescribed.

I am in two minds - the list of side effects is a long one and I have never tried any sort of DMT, as none were appropriate for me - BUT - on the other hand, I desperately want to stay as mobile as possible and out of a wheelchair as long as possible.

Hi Daffodil,
Welcome to the forum from another newbie.
It’s a question I posed myself on July 3 which has elicited one response so far.
I hope that we both get further responses.
Best wishes

No experience of siponimod but if you put it in to the search function it will give you a few leads.
I would also look at the MS Society and MS Trust websites for information. Look up NICE for eligibility.

Hope this helps but you need to prepare yourself and talk with GP/MS Nurse/Consultant

Hi, Im on siponimod, have been for 12 months. I would go on it again if i had my time over again, ive not suffered lasting side effects, apart from high liver tests, (and the nurse wil do regular blood tests to check on you) but i dont feel any problems

Thank you for your replies, suggestions and advice. I had already ‘googled’ the drug and read info from various MS charities/organisations prior to my appointment with the consultant so I had some knowledge. What bothered me was the long list of potential side-effects and less info about anything positive to be gained! This is why I thought I would check with real people for their feedback. Thanks ACT1.

I am hoping I will get an appointment with the MS Nurse sometime soon when I can think about it further. The consultant was offering it, but not encouraging me or trying to persuade me. So I do feel I would be a bit of a guinea pig. It does also seem to be hugely expensive - although, no doubt, the NHS have negotiated a much lower price or NICE would not have approved it.

If anyone else out there has any experience, good or bad, Ulsinus and I would be very pleased to hear from you.

best wishes everyone

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