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Fampyra

Hi all Just about to start the treatment and would like any input from anyone who has tried or is taking fampyra .

Hi. This is the drug that is also known as fampridine I believe.

I haven’t tried it myself but a friend with ppms has been on it for a few months. She tells me that her walking has improved a little (I think 25% is what can be expected). But she also says that manual dexterity, cog fog and memory have all improved.

She got it free for the first month and is now paying to continue treatment and says it is definitely worth it.

Good luck , I hope it works for you as I believe it only works for 40% of us.

Hilary

Hi - I’ve been on Famprya for just over 6 weeks. It has changed my life - I had deteriorated to the point where I was struggling to carry on day to day. Needed two sticks to walk (had been using one for 18 months), sleeping several times in the day, struggling with bladder control. Now, I’m on one stick again, sleeping at night only, in charge of my bladder. Oh, and my walking speed has improved by a quarter. I love this drug but I don’t understand why it’s being marketed as a walking drug only. It improves the transmission of messages down nerves with lining damaged by MS. Why would this improve walking but nothing else? Hope it works for you

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Hi, ive not been on here for a while but saw this thread and wanted to share my story! Im on my last few days of my 4weeks free Famprya. Back to hospital on Monday! I too am better on it, my walkings improved! I don’t need a stick at home anymore! I just use stick at work and one crutch if out and about! The first week it upset my sleeping pattern, I’m ok now sleep all night. Just wish I could get on NHS don’t know if I can fund myself indeffiantly? Fingers crossed my timed walk will be beaten on Monday, I’m sure it will I feel quicker and steadier! Like Sewing chick said its changed my life! I’ll let you know how Monday goes!

Went to hospital yesterday! My timed walk had double. My consultant said I was the best result he had seen! So I now have a private prescription for 3 months funding myself. I feel so much better in myself. I not as fatigued because walking is easier! If anyone gets the chance for a months free trial I would say try it! It’s changed my life! I know it doesn’t work for all but when you can hardly move, anything is with a chance!

So pleased that you have had such a good result with Fampyra. I am waiting to start the month’s free trial. I will also have to self fund after that but as you say it will be so worth it,if it works. I will let everyone know how I get on. A x

Has anyone in Scotland been prescribed this? How much is a private prescription?

I was told by my ms nurse that if you are a responder to Fampyra within the 4 weeks, the cost would be £372.00 per month. This is what the drug company charges. I am not sure if my neuro will charge me for writing a private prescription. A x

P.S. I will be using money from an insurance claim to pay for Fampyra if the drug works for me. It seems the right thing to do as I wouldn’t have the money if I hadn’t been diagnosed with MS. I will try almost anything to improve my walking as I am stuck indoors most of the time. I think it is desperately unfair that this drug isn’t available to everyone with MS on the NHS. Does anyone know of any health region funding it? A x

Hi EricT,

My name is stevo from Australia, I have been on trial for Fampyra for the last 6 months and found it has helped me with my speech as well of my walking ability has improved, I haved also tried 4ap but i have found this Fampyra much better. This Fampyra might be on the PBS with in 12 months over here in Australia and i think it might be available in your country very soon FINGERS CROSSED Take care stevo450

I don’t think it is going to be available here anytime soon as NICE has no plans to even look at it (I found this out from an NHS North East document on Fampyra - can give you the reference if anyone’s interested).

For Amily, great if you can get it for £327 through the NHS - I know that’s what it costs them. If you get it on a private prescription from Boots, it costs £430 for four weeks supply. How’s that for a mark-up?

Hi Sewingchick, I think you misread my post. I have been quoted £372.00 for a private prescription of Fampyra. I cannot get it through the NHS in my area. My neuro will be doing a private prescription for me. A x

Hi, I have been trying to get this drug too and have written to my local MP. I have a cervical lesion and my walking is affected even though I do not have an MS diagnosis my neuro thinks it could still help me. I have tried to get the drug on the NHS on the basis that I am a full time carer of my son who is 19 and hasDowns and autism. I have to do everything for him and am finding it increasingly difficult due to my own problems. Social services have offered me a place of full time care for him. This would cost them £6000 per week but I want to keep him at home and for them to give me fampyra (£5000/year) which would hopefully help me so that I could look after him. Essentially the ‘fampyra for me’ option would save the government £307,000 per year, enable my son to say at home and help me. - win - win - win. But the answer remains no !

Moyna x

Hi Amily

I don’t think I misunderstood - but tell me if I did. My GP showed me a quote for Fampyra for £327 for four weeks, but he didn’t offer to supply it through the NHS. He told me to shop around with the private prescription I got from my neurologist and see the price the local pharmacies would supply it at. I did and they were all around £435, give or take a few pounds. In fact, I got my first month’s supply from what I assume is an NHS pharmacy attached to the National Hospital for Neurology and Neurosurgery and they charged me £560 for a four week’s supply there. So I was happy to get it for £100 less.

I assumed that you have been told that the pharmacy attached to the hospital where you go will supply it to you at what is cost price to them, that is £327. Am I right? I wish I had the option of paying £327 for Fampyra

S

Hi all, I’m still responding well to Fampyra! I have applied for funding through my GP await result? My private prescription through my consultant at the Queen Elizabeth Hospital in Birmingham is £230 per month. My MS nurse has been told by the drug rep they sell them for £180! She is currently looking into the £50 difference? She tells me they recently dropped the price by half! I think they are charging us what they want! How unfair is this! Postcode lottery again!

Hi.

I´m brazilian and my EM isn´t so hard. I can walk whithout sticks. My doctor prescribed Fampyra, but I didn´t know that in UK the first month can be free. Here they are charging $1000,00 at the first month. It´s possible to buy it less expensive?

Excuse my english.

Best regards.

Hi.

I´m brazilian and my EM isn´t so hard. I can walk whithout sticks. My doctor prescribed Fampyra, but I didn´t know that in UK the first month can be free. Here they are charging $1000,00 at the first month. It´s possible to buy it less expensive?

Excuse my english.

Best regards.

Hi all.

Really pleased for everyone that Fampyra seems to be working for. Ive been on it for 3 weeks and have got worse! My legs won’t work at all and my balance is worse than ever. My Neuro didn’t even let me do the 2nd timed walk as I was in a wheelchair. He asked me to walk to the opposite side of the room in his office, (about 5 steps) and after 1 he grabbed my arm. He said to finish the trial month but not to take anymore. This was last Tuesday ( 9/4.) By Thursday evening and after 3 falls I decided not to take anymore. I thought long and hard about posting this because I don’t want to bring anyone down but then I thought we know it doesn’t work for everyone so why not. Onwards and upwards…!!!

Thanks for that Stevie, I’d only heard good reports and was very angry/depressed about not getting to try it. The usual ‘first do no harm’ etc BUT hey very thing has a reason. So thanks very much for that, kind regards M

Thank you M. I just hope I haven’t upset anyone.