Hi, My Fampyra arrived today …only been waiting since June! Walking test tomorrow…then fingers crossed that I’m a responder. Nina
Well done Nina!!!
Fingers, toes and everything else crossed,
Pat x
Chris 52 - Tks for reply. Pleased you doing well now 1 year on. Good example of fampyra working. Note your comments about monthly costs eating into assets - hoping in time that may change. Ninagrace 7 - very best of luck with your trial. Hope you respond well. I received my fampyra a week ago but went away for weekend so delayed start. However I returned with a heavy cold so planning to start taking this weekend !
I did the trial. After 3 weeks, MS nurse took one look at my walking, and said it had not worked. If it is going to help, apparently is works fast! Huge disappointment, as it was the first treatment I had been offered to help with PPMS. Worse was to come. As soon as I stopped taking the Fampyra, my walking deteriorated fast, worse than it had been before I tried the drug. It was a bit like when I had been overworking, which can cause problems for a few hours, but this was constant. Perhaps I was relying too much on the Fampyra, and was not exercising/stretching as much as usual. Have been told it can take 10 weeks to get the drug out of the system. Going to try Yoga. More hard work than popping a couple of pills each day (but cheaper!) I would not try and dissway anyone with PPMS, from at least going on the free trial, but be prepared for getting knocked back, if it does not work. I am keeping tabs on any developments, and would try anything offered, but I am hoping the stem cell research that has been funded by J K Rowling, will be successful. I will be first in the que. In the meantime, I suppose I will have to get a yoga mat, and a leotard! Wife and kids will think I have lost the plot!