I have recently got a new Neurologist, I have been without one for a few years.
When I first saw her, she mentioned that there was a drug for Secondary Progressive MS and I had an MRI to see if I was suitable. I have a call from the MS nurse tomorrow, and my wife suggested that I ask her about it, but I thought I would ask here first
Thanks for any replies
Pete
It might be Siponimod, but no personal experience.
Go with it. Get the scan.
Siponimod was licenced in October/November 2020, Ive been on it since June last year -dont know if it works or not because i dont know what id be like without it but as it was the only thing offered to me I went with it. I only have mild side effects of loose bowels but that it sorted with Loperamide. There may be something eles new which i dont know.
hope that helps, if you want to know any more, let me know
Thanks for that. I had a call from the MS nurse yesterday and asked her the same question.
She didn’t mention any drug, but she did say that sometimes the drugs can cause more side affects, and can make you feel worse.
I reckon that she must have been talking about the same drug….do you not get any bad side affects then, just dodgy bowels?
I was on Rebif years ago and it gave me flu like symptoms, which were meant to go after a couple of weeks, but lasted ages
Pete
To begin with my blood pressure was unsettled - dropped and then went high but within a couple of weeks that settled down, and like I said loose bowels and that is it. My liver function test went high, and has since come down but not back to normal, but I didn’t feel any different. I’ve not been on anything else as I was only diagnosed 2 years ago and the neurologist thought I would be a good candidate for this tablet.
I know there are others on this site which have taken Siponimod - I dont know how well they are getting on with it
Thanks for all the replies, I think I will stay on nothing