Forum

To start taking DMDs or not

I was diagnosed with MS in March 2012.

My first neurologist said I did not qualify for DMDs as my last two relapses were too close together.

However I now am seeing a new neurologist who has reassessed my history and says I do qualify for beta inferon or glatiramer acetate drugs if I wish to start taking them.

I am undecided about starting to take these drugs and I would be grateful to hear about anyones experience.

My symtoms are fairly mild at the moment; slight limp my left leg, numbness in my left hand and optic neurtis in my right eye.

I haven’t had a new relapse since last January and generally my symtoms have not got any worse in the last 12 months.

My gut feeling is not to take anything and wait for six months to see how things progress.

Is this a sensible approach or should I start taking DMDs as soon as possible?

Whether or not to take DMDs is a personal decision and there really is no right answer (although people can get very passionate on both sides of the argument!).

I am a fan of DMDs. One huge reason for this: they work brilliantly for me. The years I have had off DMDs have seen loads of relapses and worsening disability. The years I have had on DMDs stop this almost dead: I had a couple of very minor blips, not worthy of the word relapse, and only one new lesion during more than 3.5 years on Copaxone and I have had only one minor blip on Rebif, when it was too early for it to have properly kicked in, and my lesion count has gone down - this is since June 2011.

So they work wonderfully for me, but they do not work as well for everyone. Thankfully though, these days there are the second line DMDs for people who the injectables don’t work (i.e. Gilenya and Tysabri) - but to get onto one of them, most people have to have tried the injectables first.

I think one of the most telling things about the injectables for me is that, once someone’s been on one for at least six months, neuros generally consider a clinically significant relapse to be a “treatment failure” and want to move them to something else. So, the data may say that the injectables only reduce the frequency of relapses by 30%, but neuros expect 100%. [By clinically significant I mean a relapse that is serious, debilitating or disabling.]

But what about someone whose MS is mild - should they bother? Well, even accounting for my bias in favour of DMDs, yes, I think they should. Two reasons: first, DMDs work best when they are started early and before any serious disability has set in and, second, DMDs are preventative not curative and no one knows when the next relapse (which might have been prevented or at least reduced by a DMD) will be a doozy and leave someone with much worse, permanent disability.

Some of the things that injectable DMDs have been shown to do: reduce the frequency of relapses, reduce the severity of remaining relapses, reduce disability, extend life span, slow progression. Yes, they have side effects, but the vast majority of people only get red blotches and/or a bit of short-lived stinging and “flu” side effects are normally easily managed with paracetamol or ibuprofen and they usually wear off anyway. When I compare those two statements, it’s an easy decision for me.

Hth!

Karen x

PS One of the most common reason for not going on a DMD is being scared of needles. The manufacturers have tried to help with this by providing autoinjectors and some of these mean that you don’t even see the needle.

As Karen says its a very personal choice,but in the lead up to starting Copaxone I had 4 relapses in a year and the last one left me with residual symptoms.I am now stuck with those.

Since starting dmds I haven’t had a relapse.

To me starting them asap would be the answer but you have to be happy with your own choice.

Why not go onto msdecisions site and read all about all the dmds.

Good luck whatever you choose

Pip

I don’t have a fear of needles.

My hesitation about starting DMD’s is whether the benefits will outway the side effects for someone like myself who’s symptoms are mild (for the moment at least).

I have had a look on the MS decisions website and if I do decide to choose a drug I would probably go for Avonex. I don’t fancy injecting everyday but I could cope with once a week.

I will do a bit more research and make a decision this weekend. At the moment I am 50:50.

Does having MS make it harder to make decisions?

What the hell !! That was not supposed to go there !! What I was going to say was, that, yes, I do think MS makes decision making harder. I know I used to be a very assertive, decisive person…but no longer. Xx Ps does anyone know how to remove a post please ?

Whatever that was, I’ve deleted it… wasn’t it pretty though? Just report a post if you need it deleted, one of us will get to it soon

Val

[Moderator]

It was a Greek email to a friend that I’d copied ready for posting onto a ecard!! Thanks very much Val…before I looked an even bigger fool than normal !!