Fampyra

Hi all, I am now into my second week on Fampyra and my walking has definitely improved a lot. :slight_smile: I am now able to walk around the house without my crutches and much faster too. I cannot believe the difference this drug has made. I am due to see my physio and ms nurse at the end of the four weeks for the timed walks and I can’t wait to show them the improvement. It feels a little strange to be walking without any support but I am hoping that my confidence and stamina will continue to improve. I feel really positive about the future for the first time in a few years. :slight_smile: The only side effect that I have noticed is difficulty sleeping. This is unusual for me, so I think it is due to the Fampyra. It took me a year to persuade my neuro to give me a private prescription for Fampyra. I hope that he will now be persuaded to let others try it and if more and more people are showing such improvements with their walking that eventually it will become available on the NHS. Amily x

That’s good news Amily, the more stable you are the better for your muscles so yes, hopefully your stamina will improve.

Look after yourself and stretch too :slight_smile:

Sonia x

Hi All, I just thought I would do a little update on my Fampyra trial. I have had my timed walks done with my physio and MS nurse. I am pleased to say that my walking speed has improved by about 40% and I am definitely a responder to the drug. I am very pleased with this and I am hoping that it will improve the distance that I can walk as well. I have been told that I am not to rush into trying to do too much. I have to have weekly physio sessions to do some work on my core muscles as they are weak which means that my balance isn’t too good. I am doing all the exercises at home as well and hope to see more improvement as time goes on. I have to wait now for my neuro to do another prescription for Fampyra and I hope that I am not waiting too long. It will be interesting to see what happens with my walking now that I am without the tablets until the prescription comes through. I’m not looking forward to paying £192.00/month but it will be worth it. Amily x

Good news Amily :slight_smile: I had my first physio appointment this week, it was really good. I hope you get stronger again too :slight_smile: Sonia x

Ive been mentioning this word ‘Frampyra’ to my MS nurse for the last year, but he keeps avoiding the subject. All he says is: Speak to your GP ! So, on Friday i have an appointment with my GP… Lets see if she ignores my request too. Ive heard it works with mobility from other posts past & present, so lets see what she says after i mention HARD EVIDENCE & FACTS from other sufferes.

Hi Dave, Hope you will let us know what your GP says. I’m particularly interested because my GP told me that Frampyra can only be prescribed by a consultant ! Nina

Hi All,

Back from my holiday which was great, weather mixed, first week fantastic 2nd week dry but grey. Brilliant to be able to walk further so I didn’t have to depend on my scooter all the time. I’m still using a stick for balance but felt almost normal at times!

Have caught up with all the comments, great news Amily I do hope you continue to see improvements. I haven’t been keeping up with my exercises whilst away so I must get back to them, you’ve made me feel guilty. I am still having days when I don’t walk as well, am I doing too much too soon? Are you seeing a consistent improvement?

I’ve just received my next 3 month’s prescription at a cost of £573.30. It’s even more frightening when you pay for more than one at the same time. I do need to see a consistent benefit to make the cost worthwhile.

Dave I hope you get some positive news from your GP. Let us know how it goes.

Skye

Ninagrace: Same thing happened to me on Friday. I saw my GP, but was also told they cant prescribe it, i had to ask my MS Nurse, but he can only recomend it, so id have to go back to the GP for the prescription… back to square 1: my GP wont prescribe it !!! They wont even tell me how much of it to take if i bought it myself, as they dodnt know the dosage until i try it… How can i try it if they wont prescribe it to me ? Durrrrrrrrrrrrrrrr No joy in Denbighshire, North Wales im affraid.

That’s rubbish… I completely understand the NHS approach on this, as it clearly is an expensive drug BUT I’m adamant that for those of us with PPMS we should be given the option if it might help with just one aspect of our MS - Sonia x

Hello mate,

GP’s can prescibe it, mine has. To get the free trial a neuro has to prescibe it and monitor the patient.

So I have a script ready to be dispensed, it will cost 190.10 for 1 months supply. However after further research I’m not going to bother. From what I can make out the cost to benefit ratio really isnt worth it, with the concensus being if it was 40 a month that would be more like it for the ‘average’ potential benefits.

Ive looked at many videos and read many an anecdote, even outed a drug company shill on this very site saying the benefits were trully unbelievable.

Believe me I would find a way of paying for it if it worked, but I’ve seen NO HARD EVIDENCE it does .!!

I tried the free trial and it made no difference to me , unfortunately. I would love them do to some research to see what type of people it worked for. I only had a cervical lesion which gives upper motor nuerone problems - such as hyper, relexes, weakness and spasticity,

Moyna xxx

I finished my Fampyra trial nearly three weeks ago and I am patiently waiting for my neuro to write a new prescription so that I can start taking it again. Since taking my last Fampyra tablet my walking is now worse than it was before I started the trial. My legs are weaker and the spasticity in them is worse. I hope that this is temporary and that when I start taking the Fampyra again that I get the same improvements as before. However, it is worrying that stopping the treatment may have caused this deteriation in my walking and I thought that it is something that people should be aware of. Amily x

Amily, it really does sound like being stuck between a rock and a hard place! Even if it does worsen the ubderlying condition, is it worth it to be able to walk now?

Do you do leg stretches? Walking badly messes up a lot but having a good stretch does seem to help me - maybe speak to an MS physio?

Good luck with getting your prescription, you must be frustrated having to wait!

Sonia x

Hi Sonia, Thanks for your reply. I regularly see a neuro physio. I had an appointment with him 10 days after stopping the Fampyra and he was going to do some stretches with my legs. However, they are now so stiff that he couldn’t stretch them! He agreed that my spasticity is a lot worse now. I take 60 mg of Baclofen and 6mg x 3 of Tizanidine but this is not helping much at the moment. I am hoping I don’t have to wait too long for the new prescription. It is very frustrating after experiencing the improvements whilst on the Fampyra. Amily x

Crikey, you poor thing, that’s prety bad. I’m limping by on half a baclofen tablet 3 times a day just to take the edge off the shakes… I’v been resisting taking a higher dose so really having to make sure I stretch plenty.

Hope you get back on the fampyra very soon

Sonia x

It is really weird because I tried Fampya in July/August and it made my balance and spasticity worse. I am better than I was having stopped but I am not as goog as I was in June. I know this because I cant do some of my yoga poses that I had no problem doing in June. I dont have a PPMS dx (but my symptoms are similar and I have had progression). The MRI I had in June showed the lesion had gone and the neuro therefore expected me to be stable. I had been stable from January and after Fampya I am worse. I did read somewhere that some neuros think That as the drug sends more impulses down the spinal cord that it can put in under strain/pressure.

Moyna xxx

Hey folks,

I completed my trial of Fampyra on 13th September and my walking, balance & spasticity are considerably worse than they were before the trial.

If that possibility had been given more emphasis when the private consultant was happily taking my money, I’d have been a lot more reluctant to give it a try.

Feel very let down

Please see my update on the ‘fampridine’ post on ‘everyday living’ if you are interested. Amily x

Moyna - I understand from a previous post from yourself that you have not been diagnosed with ms - can you please mention this fact when you post. Tks tony

Moyna - I understand from a previous post from yourself that you have not been diagnosed with ms - can you please mention this fact when you post. Tks tony