Hi Bouncy,
That Barts blog post referred to a 5 year study of responders. I’ve been reading the blog posts for a couple of years now and I’ve learned about super-responders to DMDs, (I must be one!) and how they are trying to find out what differentiates the responders from the non-responders.
I still haven’t learned how to copy and post on my ipad, but they did write that the responders were still walking well after 5 years.
It is awful that people don’t respond to various drugs and the only way so far, is to try them. I have great sympathy for anyone who is worse after trying a drug, but it doesn’t mean that this is going to happen to everyone. We should have a right to try trialled drugs that may really become life-changing.
K
x
Does anyone know of compounding pharmacies in the UK that will dispense 4 aminopyridine if I can get a prescription from my neuro? Paying nearly £200 per month via BUPA for fampridine is a lot, though worth it to me. Thanks!
Hi Alison,
reading this thread from Germany. Quite astounding that I often read that people are paying themselves for this drug…guess I am lucky. I have been taking it since 2012 but lately I recognised that the effect had been slowly diminishing and now it doesnt help at all. In the beginning we made the walking test and it nearly doubled my walking speed. Now I dont see any improvement anymore and I have lived couple of months without it (I still get it prescribed though). At the beginning without it was bit difficult because somehow your body gets used to it but now I am on my “normal” level. This may be quite normal for some unlucky people like us.
What are the effects of stopping a long course of Fampyra?