Forum

Confusion over DMD's

If a person with RRMS hasn’t been put on DMD’s in the first 2 years since dx and is currently not having new relapses but experiencing ongoing symptoms from previous damage; I’ve been told that it is more difficult to justify (cost?) starting DMD’s now… Is this right, so do I have to wait until new relapse and further damage done?

Theoretically yes. You need to have had 2 relapses in the previous 2 years to qualify for DMDs. But many neurologists are prepared to use ongoing symptoms as evidence of disease activity. Plus if you have new lesions on MRI, that can be used as evidence of a) relapses, and b) inflammatory activity.

So it’s worth talking to your neurologist now about DMDs. Rather than wait for more relapses which can cause long lasting or permanent damage, see if you can get on a drug now.

My MS nurse was very keen to sort out a DMD for me even though theoretically it could (easily) be argued that I don’t qualify because I am too disabled on the EDSS scale. Equally, were I to qualify, as a person with progressive relapsing MS, I should only qualify for Extavia which I can’t take. Basically the only DMD I was able (based on previous side effects), and prepared, to take was Copaxone my MS nurse said she would argue the case for me should it be needed. In fact, my neurologist seems to have magically discovered the rules were different to those listed in NICE guidance and got the funding for me to get Copaxone.

So, try talking to your MS nurse about this conundrum. See what s/he says. Then approach your neurologist.

Sue