My latest relapse (now pretty much recovered) made me eligible for DMDs, 14 months after diagnosis. Previous relapses (bar one) had been manageable but my last one required steroids as I had a lot of pain and struggled to do anything much. Thanks to you guys and gals I’d already done my research and narrowed it down to Avonex and Rebif. Hubby then did his own research and narrowed it down to the same two! My final decision was based on the fact that Rebif is the “gold standard” drug, against which all new drugs are compared. Must be good then, right?!! Had my regular MS nurse appointment today and it’s going to be so quick as they no longer have to get funding approval. Basically I’ll get a call to arrange delivery and injection training within a couple of weeks - and that’s only because my consultant is on annual leave and can’t sign the prescription this week! I’m excited but nervous. I think I’ll actually be delaying the start of injections until August as we go on holiday in July and I want to avoid side effects then, especially as it’ll be such early days of treatment. X
That’s great news. I felt so much better knowing I was doing something proactive to prevent relapses. Rebif has worked very well for me; I went 3.5 years without a relapse before having one in March. Even that was much milder than my previous relapse. I’m still struggling with fatigue but at least my walking wasn’t so badly affected this time. I hope it works as well for you.
I started mine today hun and so far so good but it is very early days as I’m only on the 8m dose. So good luck hun. I’m hoping it’ll deter anymore relapse or the severity …bad enough having one dodgy leg … Don’t want any further damage. Good luck xxxx
It’s strange to be excited about injections isn’t it?!! Tracey, that’s great to know it’s been working for you. I’m hoping it works for me as well. Although my previous relapses have been manageable, there’s been a few! Official count is four in 21 months but my count in hindsight is six in 24 months. I was just investigated for different things like carpal tunnel syndrome and weak eyesight and the neuro couldn’t change the previous diagnosis in each case as he didn’t see me at that time. Lisa - I’m starting on 22 and moving to 44 after four weeks, the 8 wasn’t mentioned to me. I’m glad yours has been ok so far…fingers crossed that the side effects stay away. X
My official count was 3 in the first year but I think I had another one which I didn’t report as I thought it was part of getting over the biggie relapse. However, with hindsight it was all new symptoms so I should probably have logged it as another relapse. It was all a steep learning curve at the start and wasn’t helped by health professionals who don’t really give you much info …
At least now I’m on Rebif I have access to the nurses at the hospital and can always ring with a query and know they will get back to me within 24 hours. I also get seen every 6 months without fail. (In the first year it was much more frequently and I assume you will get the same level of care.)
Good luck with it, hope it all goes well