Forum

fampradine

Hi everyone Just wondering if there is anyone from Wales on fampradin? Last year my Neuro said He put me on the list and that I was at the top but this year it’s too expensive to prescribe. It’s supposed to be good with helping walking but doesn’t look like I will be trying it. Karen xx

Hi Karen, im in North Wales and have read a lot about this Frampradine, both on the net and from others on here. I have an appointment/Clinic with my MS Nurse next Friday and will mention it to him as i am on no medication… im just told to take vitamins. So it will be interesting to see what he says. I’ll keep you posted :slight_smile:

Thanks Dave

Be nice to know what your ms nurse says.

I am in south wales.

I am on pregablin and just put on backlofen for the. Stiffness in my legs.

Stay in touch

I was prescibed Baclofen, but dont reallt take it. It does control spasums but i find it relaxes me too much and i feel like jelly on it and need to sit down all the time, its perfect just before bed coz i can sleep without any spasums. Im in a trial mode at the mo… to see what works for each symptom. Baclofen does work (for spasums), but has other effects on me. Im just starting on Vitamin D, so will see what effect that has. I have mentioned in other posts that the only thing i find to help my legs, awareness etc … is alcohol, but i dont want to be relying on that as it has other long term effects that add to my already symptoms. I’ll let you no what my nusre says :slight_smile:

Hi I have just come across your message, my husband has just completed a 12 month clinical trial on frampradin through the Walton Centre in Liverpool. The drug has helped to improve the signals from his brain to his leg and therefore improved his walking slightly. There is no funding as yet via the NHS for this on prescription but the drugs company have confirmed they will fund a further six months supply. Steve took himself off the drug earlier this week to see what effect it had, it is taken orally twice a day 12 hours apart, after missing just 5 tablets his walking deteriorated considerably. Steve has now gone back on the drug, we will have to wait and see what happens in Dec to see if there is any further funding from the drug company or if it is available via the NHS, I believe the current cost is £4,700 per year.

Thank you shaboobo

That is good to know, hope your husband finds it helps again now that he is back on it. Hopefully it becomes available on the nhs and then perhaps more people can try it.

Karen xx

I dont get all this: Drug stuff that helps people, but not being available on the NHS. If drugs help someone (as in Steves case), then theres clear evidence it can help us too. What do the goverment want us all to do: Smoke illegal weed and take some other class b drugs to deal with symptoms, or go with evidence and work out why it is that pharmacutical companies charge so much. It seems the cure for MS… is now heading down the road of… how much money do we have :frowning:

I believe that it is available on private prescription but costs about £180 per month depending where you get it from. Peter

Yea it seems that fampradine does help a lot of people reading on here but as you say we are going Down the road of how much does it cost.

Last year my Neuro was all for it and sed you go on it for a month and we see if it’s working and if not you come of it

But it dont seem that that’s going to happen soon.

Peter do you know how you find out where you can get it on private prescription?

Maybe Peter answered you by PM, but in case not, here’s my rather breathless post from a few months ago when I found out where you could get it cheap(er) on private prescription.

Thank you sewing chick, I have just phoned bupa homecare and they said to get a prescription off Neuro and send it to them to get a month’s supply for a cost of 191.00 pound.

Update from my posts above: I had my appointment with my MS clinic & present related specialists… had lots of questions for each & every one of them about:

Physio, diet, therapy, mobility, history, research etc… I had a good old chat with each of the 5 specialists for about 2 hours in total regarding my concerns…

As soon as i mentioned MEDICATION… they all went quiet and said: Is it luch time now ! I mentioned Framprya… they just left the room and left me sat there on my own. I asked for another appointment to discuss medication: Answer… we will send you a letter or go to your GP.

Kazza… i tried :frowning: x

Had an appointment with MS nurse this week who suggested that I should try the months free trial of frampradine. Fingers crossed that I’m in the 30/40% of responders. Waiting to hear back from her and from neuro. Will cross the bridge as to how to cover the costs when I know if it works for me. All extremities firmly crossed! Nina