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Fampyra 2016?

Hi everyone

Hope you are all keeping well. I was just wondering if anyone knew anything about any developments with Fampyra in the UK? I have done a bit of research and as far as I can tell it is not available on the NHS but can potentially get it privately? Has anyone had any key conversations or anything about this?

Any help would be much appreciated :slight_smile:

Thank you

Ami

1 Like

Hi Ami

There was a thread on this recently, it’s titled Fampyra and Seizures and was started by johnh on 10th February. It’s currently on page 4 on this forum.

Unfortunately, it seems that Fampyra is not necessarily the wonder drug we all hoped and expected it to be.

Sue

Hi Ami,

You’re right, it’s not available on the NHS, but you can get it on private prescription, it’s about £200 per month from BUPA Home Healthcare, your MS nurse is probably the best person to ask about it. They can probably get you a brochure about it with lots more information, including the incidence of side effects.

There is a risk of seizure, but no drug is completely safe (including coffee and alcohol), so you’ll have to make the choice whether you’re prepared to take the risk and go for it or not.

It doesn’t work for everyone (only about a third of people who try it), you used to get a months’ supply free to see if it works for you - I was on a clinical trial for it, so it was different for me (I’m still taking it, by the way).

This is paraphrased from what the clinical trials nurse has told me:

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But as for whether it does make you worse in the longer term - well, it’s the usual problem with MS, it’s so unpredictable, how would you know?

There are lots of other posts on this forum about it if you search for it, it’s quite a regular topic. And all have different views, some good, some bad, concerns about long term effects etc.

As Sue says, not quite a wonder drug though.

Hope this helps, do post again with any other questions.

Jo x

Thanks so much Jo, have only just seen this. It is very helpful and I shall talk to my nurse about it Thanks again :slight_smile: Ami

I was on Fampyra for a couple of years. While I was on it, my rate of deterioration speeded up considerably. That’s what the neurologists at Barts suggest might happen if you go on this drug. I wish I’d never taken it because I think it probably did me damage, but I will never know for certain that it did.

I get it free. I’ve been on it for 2 years now. Before; I could stand for about 5 minutes and then my legs would start to hurt and wobble.

My walking speed was very slow.

Then my neuro offered it and so I went and took it for 2 weeks. Magic. Walking speed doubled. Standing, I managed 45 minutes.

I also rediscovered my little toe on my right foot.

Im dead tired today and I’m singing in a choir. We have a famous conductor and an awesome tenor. I am keeping quiet about the ‘SIT DOWN’ messages. We have to stand through the intro and first aria. This is damn hard.ni can’t play my MSCard, but I do have a ‘just had a knee replacement’ card.

i don’t think I have deteriorated at all. I think it’s important to read all experiences, good and bad. One friend had terrible migraines on Fampyra.