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stumbler
2 months ago

@mlgilber1 , this has been used for sometime in America. Originally, it was called 4-AP available at compounding pharmacies.

It has now been formulated into a time-release version by big pharma, at an exorbitant price. This is marketed under the names of Fampyra or Fampridine.


mlgilber1
2 months ago

Thank you @stumbler


rachschader93
2 months ago

I’ve gotten a prescription written for me as well. I am hopeful it works well.


mlgilber1
2 months ago

@rachschader93 I hope it works really well for the both of us!


rivka
2 months ago

I was disappointed that it didn’t help me at all, and I also had several annoying side effects so I was happy to stop it. As my neuro told me, it’s worth trying because if it helps, it’s great.


mlgilber1
2 months ago

@rivka I’m so sorry it didn’t work for you. That’s the main thing I hear is that it either works or doesn’t. I haven’t heard much about the side effects. May I ask what you experienced? I watched a video of a lady walking before and after ampyra and they listed side effects in the video. It said may cause seizures even if you’ve never had one and that freaks me out so I haven’t taken it yet (just got it a day ago though). I hope all is well!


joe90
2 months ago

@mlgilber1 good evening I am ppms and have been using it on and off for a few years it certainly works for me I am just not to sure if its worth the £200 a month I was paying for it what I tend to do now is if we are going on holiday which requires more walking etc. I take the months worth if it was on script I would probably still be on it now no side effects at all with me seem to be more stable on my legs and walking distance was certainly much better

give it a go as you have nothing to lose as first month should be free good luck cheers


mlgilber1
2 months ago

@joe90 I’m so glad it works for you! Wish it was cheaper though. Best of luck!!!


rivka
2 months ago

@mlgilber1, I had some insomnia, which I could deal with, but then horrid dyspepsia (heartburn) and then followed by scary dysphasia (trouble swallowing). At least no seizures 🙂
But hopefully you sail through and it works well for you!


mlgilber1
2 months ago

@rivka Thank you! I didn’t even know that could happen and I already have trouble swallowing sometimes. Now I know what to look for. The seizures scare me the most. I appreciate your reply! Hope all is well!


jollynp
2 months ago

It’s amazing! Worked the next day for me! Helped with my foot drop.


mlgilber1
2 months ago

@jollynp Thank you, I appreciate it!!!!


rachschader93
2 months ago

@mlgilber1 how is it working for you? I started 2 days ago and haven’t noticed improvement but I feel a change in my body that’s undescribable. Can’t say if it’s good or not yet, for me anyways. Hope its working well for you.


gerbil
2 months ago

I was prescribed tempura by a private consultant (whom I had seen before on the nhs) it was free for the first 28 days, then £190per month. Apparently within the 28 days, you will know if it’s working. It has made no difference at all. I must be in the 70% that it doesn’t out for. If the placebo effect works, these tablets would have worked as I had such high hopes. Now I’m very disappointed


gerbil
2 months ago

That should say fampyra,not tempura. Auto correct!I


mlgilber1
2 months ago

@rachschader93 I actually haven’t started yet! I keep forgetting! I’m setting an alarm on my phone for tomorrow morning. What time do you take it? Have you had insomnia at all from it? I hope it works well for you!


rachschader93
2 months ago

I take it at 10 and 10 and yes I have had insomnia thank goodness for nyquil. I hope it works well for you immediately.


cclaire
1 month ago

I walked with crutches. I was taking it, and went to see my physio for an MoT. I didn’t tell her I was taking Fampridine. I did a walk, then told her. She said that whatever I was taking, to keep on with it. I was so expensive though, and the gap that you have to allow before and after food was restrictive. If you read all of the information in those leaflets, you wouldn’t take anything. They have to tell you all of this to cover themselves.

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