Evening,
Since I last posted about Tysabri I have spoke to an MS nurse. I have had one relapse a year since being on Avonex. Apparently if I have another relapse this year, then I could be eligible for Tysabri. I am confused! My relapses to date have been very mild, and not interfered with everyday life.
I’ve got RRMS - aren’t I supposed to have relapses?
I also thought it was usual to continue having relapses on Avonex, and it they were mild and infrequent, then the treatment could still be working.(is one relapse a year frequent??) - are there some people with MS completely relapse free on betaferon?
I still need to speak to my neurologist, but I am left thinking that I have now developed highly active relapsing remitting MS - I’ve been bumbling along thinking it was ‘mild’ whatever that label means, because it hasn’t affected my daily life. Yes I have had two bouts of optic neuritis on Avonex, a year apart (everything went back to normal after a few weeks and the last time was hardly noticeable) and I do get other symptoms, but they don’t stop me doing anything at the moment. This is so confusing. I am a bit distressed!
Anyone clear on the definition of highly active RRMS??
Thanks, Fizz x
Hi Fizz
I’ve not heard if there’s a clear definition, but fby the sounds of it you don’t have highly active RRMS. Did your MS nurse say you had it? From what you’ve written it just sounds like you’ve been told you may be eligible, and I’m guessing that your nurse will consider this a good thing, given that Tysabri is probably the most effective of the drugs available for RRMS.
But no one can force you to do anything you don’t want. If you’re happy on Avonex then I guess there’s no need to come off it. I just wouldn’t be surprised if your MS nurse & neuro recommend you switch if you do become eligible, just because it may reduce your relapse rate even further.
Give your nurse a call though and let them know any questions/concerns you have, hopefull they’ll be able to clear things up further.
Hope that helps.
Dan
Hi Fizz,
I had highly aggressive RRMS I was having relapses every 4 or 5 weeks even on Avonex I’m on Tysabri since August 2008 I think having 1 mild relapse a year is good unless they know more by looking at your MRI or something I hadn’t a relapse since I started Tysabri and I got my MRI results and was reading over them and they said I’ve had no new lesions since I started Tysabri and there has been improvement.
I think I you can manage with Avonex and you class your relapses as mild and they don’t affect your day to day life so much I’d be happy with Avonex, My relapses always left me bed bound for a week or so I started to get out about on a wheelchair then it happened all over again.
Mark x
I agree with Dan - it doesn’t sound like your MS is “highly active”, but it’s probably a bit unusual to be relapsing every year while on a DMD.
To get on a DMD in the first place you need to have 2 relapses in 2 years. If you’re on Avonex and you’re still relapsing every year, then that’s probably more often than they’d like. Saying that, the 2 relapses in 2 years rule states that they need to be “clinically significant”. If you think your relapses are really quite mild and therefore not “clinically significant”, then perhaps the nurse is over-reacting? (I would have thought that ON was clinically significant though?)
I reckon you need a new MRI to check what’s happening in there. If there are new lesions, then perhaps you should think about changing meds. Tysabri is the best thing out there at the moment. Fingolimod is hopefully becoming available in the Spring and while not quite as effective as Tysabri, it’s a step up from the injectables. As my neuro says, “You may not be as bad as some, but let’s keep it that way!”
Karen x