Do people who progress take less effective medicine? Will taking stronger ones stop the transition from RRMS to SPMS?

Everyday living
1

Hi all,

ive noticed people talk a lot about progression. At the same time, I’ve heard neurologists claim using highly effective therapies, early, stops progression from RRMS to SPMS. Are those of you progressing using less effective treatments (anything that doesn’t include tysabri, Lemtrada and ocrecus)? Can you progress even if your therapy is working and you have no disease activity?

thanks

2

Hi

I think starting a strong medication early is probably a good strategy. As far as I’m aware though, none definitely stop progression from RRMS to SPMS, they just slow it down. I was on Tysabri for a few years, and I still progressed, albeit very slowly.

Dan

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We all differ greatly, I have had MS for approx 28 years no significant relapses till ten years ago I have not had DMD’s. My mobility is steadily getting worse as are other symptoms. I am now classed as SP so again no DMD’s although I will be discussing Siponimod when My MS Nurse refers me to a consultant.

Jan x

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Neuro told me a few days ago that Siponimod is on the horizon to be looked at by NICE, but as yet not authorised.

5

She left me with the impression that it either is or would be available to people who have been classed as SP within five years. I guess I’ll find out when I see a consultant next year.

I have been SP for around ten years but she’s going to push for it.

6

No idea. In general, the less MS there is going on, the better, it seems to me. I had a great deal of MS going on when I switched up to Tysabri, and things have been quiet ever since (as far as I can tell, anyway). That’s good enough for me. Any other advantages are a bonus. Of course, you never know what MS is cooking up for you next. With that in mind, keeping as much of the system intact for as long as one can is surely the best way to face whatever lies ahead.

Alison

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Hi everyone, thanks for the positive news about Siponimod, it has cheered me up a bit. Read your comments about Siponimod which has been approved in the US for SPMS and may be approved here this year 2019. Been on TECFIDERA for 4 years does anyone know if you can take both or is it one or the other Do not see my neuro till December 19 and will definitely go for it if allowed as my walking is steadily getting worse now using 3 wheel stroller inside and outside and cannot use just a stick anymore. If any one gets any more news can they post on the site. Thank you Bertie

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