Forum

Antibodies to DMD

I’ve been on Avonex since July 2012 and had a relapse in November 2012. Now I’ve developed new symptoms, heaviness and numbness in my left limbs which I’ve never had before, it’s always been the right side. The pins and needles are a lot worse as well, all my limbs and my nether regions!

I spoke to my MS nurse and she’s trying to get me an urgent appointment. I’ve got an appointment with her next week anyway and she said she’ll do a blood test to see if I’ve developed antibodies to Avonex. I’m really hoping I haven’t as the Avonex suits me as I work full time and couldn’t cope with side effects for more than once a week.

Has this happened to anyone else? If I have developed antibodies, what would the next move be?

Lynne

I’d be pretty surprised if you’ve developed neutralising antibodies (NABs) already, but I guess anything’s possible. If you have, then I would guess that you may have to change to Copaxone or go onto a second line DMD.

I think that Avonex is slower than the other DMDs to get to full strength for relapse reduction (it takes a year or more?) so it might be that it’s just too early rather than NABs, but two relapses in relatively quick succession might make you eligible for Gilenya or Tysabri which are much more effective.

Saying that, they are bringing out a new form of Avonex called Peg-Avonex which is much more effective than regular Avonex and is only one injection every two weeks. I’m not sure when it’ll get approved, but it might be worth asking your neuro about it (assuming it’s not NABs and you really don’t want to change).

Karen x

Hi Karen

Thanks for the advice. My MS nurse was talking about recent trials for Avonex the last time I saw her. Like you say though, it has to wait for NICE approval. I’ll see what happens when I get an appointment. It’s just quite scary to have two relapses within a year despite being on Avonex.

Lynne