Forum

For those not on DMD's

I was just wondering if you don’t mind me asking why you have chosen not to use them? I was diagnosed in February and so I’m very new to all this. I’m due to start next week, but I haven’t yet had a chance to ask the side effects etc.

I wanted to add, that it’s all been very rushed with my MS Nurse and Neuro, I haven’t had a chance to ask any questions about the DMD’s at all.

Hello, Have you looked at the MSDecisions website? It has good information on all the DMDs. I was diagnosed in February also and am starting meds next week. Good luck. Sam xx

Please, … the sooner you start, the better. Have a look at the MS decisions website and try to decide ! I chose Rebif and have been relapse free for over three years. If you do have relapses when on one of the injectables, they will be less frequent and less severe. Don’t try to talk yourself out of starting. Get on one as soon as possible. R

I am going on rebif in May. I was diagnosed in 2004 but have been well really until 2010 when I had a relapse. As I’ve had more relapses now I qualify for DMDs. However I wish I’d been offered them sooner or even questioned them sooner… As the last relapse has left me with damage to the left leg. My advice is go on them as if they put a lid on relapses and reduce severity its got to be worth it. Good luck x

As far as I know, the most common reason for not going on an injectable DMDs is needle phobia / dislike of needles and the most common reason for coming off them (other than to go on something else because it isn’t working well enough) is because of side effects.

Karen x

(Sorry, another one who disregarded your post title! I’m on Rebif and used to be on Copaxone.)

Hi,

Isn’t another reason not to go on DMD’s, if you are SPMS, as I thought DMD’s didn’t have any benefit for this? I’m very uncomfortable at the prospect of going on meds, as I see it as putting unnatural stuff in the body, maybe with side effects and part of a slippery slope.

I have had very very gradually increasing symptoms over 12+ months but with no relapse proper, and have another MRI coming up. The consultants notes say “MS ?Active dmi” The consultant has indicated he might want to get me started on meds but I don’t see why if it’s not RRMS, which I can’t see it can be without having had a relapse?

Incidentally, does anyone know what ‘dmi’ means? At least that’s what it looked like in doctors scribble!

Mr S

I didn’t go on dmds when I was offered them in 2007 because, at the time, the general belief was that they did not slow down progression, they only reduced relapse rate. I heard this from a neurologist on Radio 4 (on Case Notes, I think, but the particular programme is no longer available to download) and from my own neurologist. I thought it was not worth injecting myself several times a week, when there would be no difference in the long term outcome. But medical knowledge moves on and now the view is that the injectable dmds slow progression by, on average, a third.

I have deteriorated a lot since 2007 and if I knew then what I know now, I would have taken the dmds. But of course, I might say something different if I had gone down that route - you can never know without a parallel universe to try out the other option in.

Sorry, I just assumed you meant the interferon type dmds. I am on tysabri, which is meant to slow progression by 66%, on average. I probably wouldn’t have been offered that in 2007 because new drugs don’t make it up to the Midlands too quickly and because my relapse rate wasn’t high enough then.

Hi

Ive delayed starting to have a family but as soon as number two is out I will be giving this big licks

Ellie

Thats helpful info sewingchick, thanks. I’ll have to do some more research.

Mr S

I am not taking any DMDs - I have never been offered them as I don’t ‘qualify’. I have SPMS so there isn’t much, or anything, out there for me anyway.

I don’t have relapses, just the c**pness gets a lot worse sometimes.

Hi Ellen What was the nature and speed of your spms development out of interest? I like your descriptive for it! Sums it up nicely. Mr S