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stumbler
3 years ago

@m-s-dave , I have split your question so that it becomes a topic in its own right. It doesn’t quite fit with “Ask the Experts”, as the medical experts will just tell you that it’s not approved by NICE in the UK.

But, having said that, there may be one or two members who are using this drug.

I’ve been taking it now for about 7 months. Initially i thought it was a wonder drug, certainly improved things for me. Not so sure now. My MS nurse said for me to stop taking it for a few days and see if you notice a difference! It might be i’ve just got used to the improvements now….not sure. I am seeing the MS nurse in a few weeks and she’s going to test my walking speed again.

What i have noticed is that it does improve my fatigue. (Think somebody asked about that the other day and i forgot to reply!)

Warning…..it is a lot of money. Very luckily work is happy to pay for it for me but, the not sure that the benefits are worth £200 a month if you have to foot the bill yourself!!


lin-holland
3 years ago

Hi,

I was on Framprya about 2 years ago, it helped my balance & speed quite a lot. Although it interfered with my sleep, if I managed to get 3 or 4 hour a night that ws it. When I first started it was £400 pm, then it went down to £200. I was a very slow walking person, everyone overtook me, lol

Then February 2013 I fell over & broke my nose & severly bruised my pelvis, so stopped taking it, as I was in a lot of pain & could hardly walk. After a couple of months I went back on it again, but, it didn’t seem to improve my balance or speed, an I was back to very little sleep, so have not been on it since. If I hadn’t fallen over I may have stayed on it, but, the lack of sleep wasn’t good. Def worth a try.

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