can any users please update responces and length on it, thank you
Over the last few months there have been many threads/discussions about Fampyra, please go back and you’ll find them. There were also discussions on Primary Progressive forum.
I was on fampyra for couple of months, obtained it privately but as I had no benefit no longer use it. I am around 5.5 on EDSS scale so fampyra should have helped. The odds of fampyra working are not that great but of course if you can get it, try it. Good luck.
about to start,wondered how people are doing now.
I have been on 4 amino pyridine. (Active ingredient in fampyra) for nearly a year now. My local pharmacist makes up my capsules for me. MUCH cheaper than the brand name product. I live in Belgium now and I’m not sure that is an option available in the UK. Within a couple of days of starting, my walking strength was greatly improved, my intolerance to heat/hot water was greatly improved and even now I can take a hot bath or shower without feeling like a wet rag… Something I was unable to do for years… Think I am now 2ary progressive but my decline is still very slow. On the odd occasion I forget a capsule I really notice the difference. For the first couple of weeks I built up my dosage to full strength. ( 5mg 1xday for 1 week, 5mg 2xday for week, 5 mg 3xday for week, 10mg 1xday 5mg 2xday for week and now I am on 10 mg 2xday 5mg 1xday. During this time I had horrible side effects exactly 1 hour after taking a tablet which lasted about an hour - dizzy, sick unbalanced. Now I have absolutely no side effects and can only say positive things about my experience. Am so happy to have had the chance to use the drug.
Hi
I take Fampridine as it showed a noticeable improvement in my walking. I am appealing for funding though don’t hold out much hope an am also investigating the route taken by Ginsozzled, after reading about someone doing the same in Australia. Anyone out there who has anaged to achieve this inthe UK?
Thanks
Hi
I take Fampridine as it showed a noticeable improvement in my walking. I am appealing for funding though don’t hold out much hope an am also investigating the route taken by Ginsozzled, after reading about someone doing the same in Australia. Anyone out there who has anaged to achieve this inthe UK?
Thanks
I’m on Fampyra, but used to take 4-ap (Fampridine ) until Fampyra became available in the UK. You can’t get 4-ap in the UK. You can ask your doctor to give you a private prescription and email it to Skips Pharmacy in California . They will send two months supply for about £80.
thank you for updates
Can you really get your gp to prescribe fampyra and send it to California? I’m in the uk btw. My neuro had said he will prescribe it for me but has now said he not allowed to write a private prescription for his NHS patients anymore because of some new ruling. I just want to try the free months trial and then make my decision
Ask your GP for a private script. Fampridine is the forerunner of Fampyra which is the slow release version available in the UK. If you want actual Fampyra you can ask you GP for a private prescription but you’ll have to pay for it. £191.50 for 28 days. BUPA Healthcare will supply. Only a neuro can arrange a free trial. If you want Fampridine you send your private script to a pharmacy in California.
Best be sure of your pharmacy.
http://multiple-sclerosis-research.blogspot.co.uk/2014/03/accidental-fampridine-toxicity-from.html
Yes, I always thought Skip’s Pharmacy was in Florida.
Geoff
Thanks for replies. What is the difference between fampridine and fampyra ? Do they do the same thing? Why s fampridine so much cheaper? This is a new avenue for me to explore! Jue
Sorry ! Skip’s Pharmacy is in Florida! Fampyra is a sustained release version of Fampridine .
john, how long have you been using and what benefits are you still seeing
Joy I’ve been on Fampyra for about six months. Initially helped walking, fatigue etc, however In December my mobility turned bad and I had a course of steroids which brought me back to my Fampyra ‘normal’. Posted a while ago about the steroids ‘working’ even though I’m supposed to be primary progressive. I saw a neurologist in February who has arranged an MRI with contrast scan at the end of March to find out if I might be relapsing remitting, and, if so, treat me accordingly . He said I had to wait three months after taking the steroids otherwise he might get a false negative result. That’s a bit of a story a bit off subject, but I wanted to tell you that the neurologist suggested I tried Fampyra (he didn’t know I’m already on it) as he has a number of patients with all types of ms greatly benefitting.
Bump