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Fampyra update

Site seems to have gone quiet here re fampyra after all the blogs of 4 - 6 weeks ago. I eventually saw my neuro a month ago and he said he would arrange for me to take fampyra on a month’s free trial. Phone call from healthcare at home today advised it will be delivered tomorrow. Now I’m on the cusp of taking fampyra I’m a little concerned re many negative responses to taking the drug, on this site 6 weeks ago, especially where symptoms worsened. Hopefully short term. To counter that many people benifitted considerably after taking fampyra. I (and others I’m Sure ) would much appreciate a feedback (Positive or negative) from you to know how you are now. Tks in anticipation Tony

Hi Tony, I was asked 2 years ago if I ould take part in the Fampyra study here (Austria) it really worked for me but as it is a system of different insurance sompanies for health, mines rufused to fund it so back to normal now. If you have the chance go for it and given it would be NHS funded you will be covered.

Good luck.

Rick

Won’t be NHS funded, I’m afraid. £191 for 28 days supply from BUPA Home Health Care. I’ve been taking Fampyra for four months now. Walking, with a stick or rollator, much improved, bladder urgency improved (although now on fantastic Betmiga), and, most importantly, less fatigue. Hope, like me, you’re a responder. John

[quote=“Graf 123”]

Hi Tony, I was asked 2 years ago if I ould take part in the Fampyra study here (Austria) it really worked for me but as it is a system of different insurance sompanies for health, mines rufused to fund it so back to normal now. If you have the chance go for it and given it would be NHS funded you will be covered.

Good luck.

Rick

[/quote] Rick, What improvements did Fampyra give you - and did you have any problems when you stopped taking it - and for how long did you take it.

Johnj - Has done very well - which is assuring - but we have heard from people who wish they had not taken it. Left many of us undecided. So lets hope Tony does as well as John.

For me it was the difference between night and day. I was able to walk independently, balance was better as was my bladder. After a year on trial I was not able to get them here any longer so have had to revert back to using sticks.

Guys - thanks for replies. Received delivery from healthcare at home 10 minutes ago. Am going away this weekend so will not start taking it until I return next week. Graf 123 - it’s a case of paying for it here also after the first 4 week trial. Sad to hear you cannot continue taking fampayra After being a positive responder to trial. Tks. Tony

Good luck Tony :slight_smile:

Nindancer - tks. Something I wanted to mention to you. I seem to recollect that you have problems with footdrop. Have you tried a " Foot up". A device that fits around the ankle, secured on itself by Velcro and then attached to a plastic strip that fixes under shoelaces. Quite effective although when my foot got weaker I secured fixture too tight and developed a wound at rear of ankle. Another alternative and more robust is a “musmate” . Fixes under clothes around waist and shoulders with a thick elasticated section inside trouser leg to attatch to Velcro fixture under middle of shoe. ( I modified this fixture on shoe to being a loop of strong wire fixed to lowest shoelace eyes ). Works extremely well and would be lost without it. Both I acquired at local physiotherapy department free of charge. Tony

John, Someone at our MS centre has been told that in future our local hospital can no longer issue a prescription for Fampyra, nothwithstanding that she pays £191 a month herself. Do you know whether it is easy to get it direct from BUPA health home care or do you need private health care cover?. Thank you. Peter.

Prisoner My neuro wrote my prescription and sent it direct to healthcare at home who arranged for my first four four week supply of fampyra to be delivered free. For further monthly supplies I pay healthcare at home directly so as far a I understand my signed prescription legalises my on going supply as long as I’m prepared to pay for it. Bupa healthcare would interface between neuro and fampyra supplier in the same way as healthcare at home. May I suggest your second hand info from ms centre may be incorrect. I remember from a few weeks ago, someone on here got their prescription for fampyra from their own doctor. Tks Tony

Prisoner

I get a private prescription from my GP which I send to BUPA Home Healthcare. They take payment over the 'phone and either deliver or post the Fampyra.

John

Chris 52 , sewing chick, Liam squash and Skye. If you see this any chance of posting as to how you’re getting on with fampayra please. - positive or negative . Tks Tony

Chris 52 , sewing chick, Liam chick and Skye. If you see this any chance of posting as to how you’re getting on with fampayra please. - positive or negative Tks Tony

Hi Tony,

I assume you meant you’d like an update from me, as I don’t recognise the name ‘Liam chick’ - especially trying out Fampyra. I posted updates before, having completed my trial on 13 September 2013.

My own experience was that the medication was great for the first few days, but then steadily became less effective for the remainder of the trial. It culminated in a resurgance of neurological pain that had previously taken 2 years, several different meds & finally mental exercises to sort out. I also experienced greater spasticity after the trial, which meant my walking deteriorated from how it was before.

The spasticity has now improved a little from how it had become and the pain is not constant, just a couple of times per day - which is bearable (…but annoying as it feels like a big step backwards when there’s often so little progress to be had )

Personally, I felt that this medication just wasn’t suitable for me, but I have no doubt that it could be just right for others. I think folk need to try it for themselves and decide if it’s the right thing for them. People just need to be aware of potential detrimental effects and decide from there.

Best of luck,

Dom

Thanks Tony, I spoke to my neuro a few days ago… he’s going to chase up my rehab, I was initially diagnosed in April and told likely PPMS at the start of July - I was referred to rehab team then. Hopefully once I get that I’ll have a bit more idea about what to do (not so much footdrop as complete leg-drop now!)

Sonia x

OOooh! -------------decisions decisions. l was so excited when l first heard about this ‘walking drug’ Fampyra. But then weighing up the pro’s and con’s has left me very undecided. l really need to know what the drug actually does that makes an improvement in walking. AND more importantly, what is it that make matters worse - for some - when they stop taking it. And is the damage permanent.

Who has the answers? - And are they willing to divulge the information.

l really felt - what have l left to lose. But then - the little bit of mobility l have left is a fine line between being reasonably independant -to being a full-time wheelchair user.

l expect many of us are in this same boat!

Nindancer - Tks. - I was diagnosed with ppms in late 2005 and have gone from as you put it foot drop to leg drop ! " musmate " has certainly helped me . Works well as I mentioned earlier but I have most of the strain from leg lift weight placed on my waist/ hips with the shoulder section loose. Having shoulder tension tends to pull me over creating lower back pain. Worth trying . If it doesn’t work give it back to physio. Tks. Tony

Liamsquash -. Sorry about the chick bit - no mouse on an I-pad, just fat fingers ! Tried to change it but it didn’t only double entered. Have just received fampayra trial package and intend to start next week after going away this weekend . Seems like you haven’t quite returned to normal after stopping fampayra recently. You have me worried - 3 yrs ago I suffered neurological pains in my left leg primarily, for 6 months after having somewhat aggressive physio on my back to free locked facet joint. Pain Quite horrible especially at night. Don’t want to go down that road again! Would you mind telling me what type of ms you have, when diagnosed and also how many weeks you took fampyra. Thanks pal Tks. Tony

Space jacket -Tks for reply. Looks like you haven’t tried fampyra yet. Understand fampyra has been in use in USA for over 10 years so it use has been well researched. Just some people react to its use adversely although some of the comments are worrying. I’m due to start taking fampyra next week so watch this space. (Normally charge for being a guineapig- lol ) Hoping from some reassurance before next week. Tks Tony

Tony (Ansimo),

I’ve had MS since at least 1998 (formally diagnosed with RRMS early 1999), and - for last 4 years roughly - considered SPMS.

Tried fampyra for the full 4-week free trial before deciding it wasn’t a viable long-term proposition for me.

As I suggested before, it works brilliantly for some, so certainly give it a try and make your own mind up whether it works for you and the benefit justifies the cost !!

Dom