Fampridine/fampyra worsening

Has anyone else experienced worsening after missing doses of this medication, that never completely resolves?

I have run out of tablets for the second time because of healthcare at home. I can’t cope with losing even more mobility.

I wish I had never heard of fampyra or healthcare at home.

Fampridine has no lasting effect. If you miss a day then the drug will be out of your system in 24 hours. To be beneficial you have to keep remembering to take it. Missed doses mean you will notice a worsening. There s no cumulative effect.

do the improvements outweigh the worsening not taking

If you found it started to help when you started the medication it is worth continuing. Just remember to take at the same time each day and don’t forget any ( obviously non delivery doesn’t help). In the first. Couple of weeks I had horrible side effects - dizzy, nausea, tiredness- which started 1 hour after taking tablet and lasted about 90 mins. After about 3 weeks this stopped and have had no problems since. I’m one of the lucky ones the difference in my walking with the tablets is brilliant

Thankyou. As I missed two doses anyway and felt the effects of this, I have decided to stop taking fampyra for a week and see how I am. I have a kidney infection at the moment which is a possible side effect, and I don’t know if this is causing my legs to be worse or if it’s stopping the fampyra. I think the fampyra had stopped working for me, I have got worse since taking them, and I can’t cope with the interruptions and worsening caused by missed deliveries.

I was sure I read somewhere that for some people stopping fampyra causes their walking to be worse than it was before starting taking them and never totally resolves. It might have been anecdotal from people on here.

I am looking to get a privet prescription for Fampyra, can any one please help???

I had read about the possible worsening as well but when I spoke to my neurologist about it he feels that some people got used to the tablets helping and when they stopped, it isn’t so much an actual worsening as not remembering fully what condition your legs were before. I also spoke to him about whether the benefit can wear off over time. He has a couple patients who transitioned to spms and went downhill fairly quickly and the benefit was not so strong but in general he has found that people who find a benefit keep benefiting.