Waiting on change of DMD

I was told to stop taking my DMD was on beta freon in readiness for starting on tysaberie had blood tests and had a MRI scan, we waited 6 weeks and nothing eventually I managed to get hold of someone only to be told no to tysaberie don’t know why but I now have to wait till a appointment in September to see my consultant to discuss we’re we go from here, just worried about the time I have to wait to discuss this issue

This is the same as what happened to me in 2010 - I came off Copaxone, had my MRI to check eligibility for Tysabri and it turned out I couldn’t have it. It took me more than a year to persuade my neuro that continuing to wait for NICE to approve Gilenya was not viable because I was relapsing all the time and getting more and more disabled. I started on Rebif44 in July 2011, 15 months after coming off Copaxone. My EDSS had gone from less than 2 (I was a serious and successful international competitor in taekwondo) to 6 (needing a walking stick).

The moral of the story is that I recommend that you don’t leave that appointment in September without the neuro agreeing to putting you on a new DMD, whether Gilenya, a different interferon (Rebif and Avonex are a different drug to Betaferon, so might still be worth a try) or Copaxone.

Know what you want before you go into the room, and don’t leave without it! In fact, take a tent with you so you can do a sit in if necessary!!!

I wouldn’t wish my 2010/11 on anyone :frowning:

Karen x