I am like Dom, I was worse on Fampridine - especially balance and foot drop.
I am like Dom, I was worse on Fampridine - especially balance and foot drop.
I haven’t seen a neuro for at least five years. My GP gave me a private prescription . Fampyra really works for me and has changed my life! Foot drop almost gone (used to wear an orthotic), fatigue much improved and bladder near normal.
I finished the Fampyra trial nearly three weeks ago, having had a good response (see my earlier post). I am still waiting for a new private prescription from my neuro so that I can start taking it again. However, since taking the last of my tablets, my walking is actually now worse than it was before starting the Fampyra trial. My legs are weaker and the spasticity in them is worse. I am hoping that when I start taking the tablets again that I still get the improvements that I had when taking them during the trial. It is worrying, however, that stopping the treatment may have caused a deteriation in my walking ability. I hope that this is a temporary thing but something that people should bear in mind. Amily x (Dom, I have sent you a p.m.)
The deterioration after stopping taking the Fampridine is one of the side-effects that we are warned about. lf you had improvement whilst on them why should you be worst then before when stopping. This is what l cannot understand. What possible damage can this drug do. Seems odd!! When you consider the ‘pros and cons’. lts one step forward and two back.
l met a chap with ms - this Thursday at the Rehab clinic where l have started to go for physio. He said he was going to try to get on to Fampridine. l did mention the ‘after-effects’. And he had not heard of them. He does not use any of the MS forums.
l mentioned LDN to him - and he had not heard of it - lf l see him next week l shall have a talk to him.
So where does it leave us all - For those who have trialled it and been successful then l can understand you going ahead with it. Most of us -especially with SPMS have nothing much to lose.
What we need is a simplistic explaination of what Fampridine actually does to us - and why when stopping taking it causes such a downturn -resulting in increased disability. Which we don’t need.
Thank you Spacejacket for bringing up the cons regarding Fampridine. It is a real quandary I find myself in. Do I fight for something which has potentially already caused me harm? I must say my walking is really bad, was it that bad when I started this drug in 2011? I am not sure, it could just be a natural progression, or could it be side effects of the Fampridine. There seems nothing out there for us SPMSers. Some of my friends who are RRMS are getting tried on Copaxone, Tysabri etc - I find myself thinking why nothing for me? I only see the Neuro once a year and I think why bother, a whole day spent being told there is nothing for you. Perhaps they are just checking for a pulse! No, sorry, that is unkind, just me venting. Last week I spent most of the day on the floor after a slip in the bathroom, I managed to drag myself through to the lounge and waited for Dave to come home to pick me up. My waterworks are haywire as well. I couldn’t get to the car yesterday for a doc appointment. Dave and I struggled to even get me in the wheelchair then I couldn’t get in the car as my legs wouldnt bend to let me stand. He had to bodily lift me. We were both nearly crying - he has something like a slipped disc at the top of his spine which gives him a lot of pain. I can’t remember my mobility being so bad whilst on the Fampridine except when I would have an infection. So all in all weighing up the long term side effects I think I would like to take my chances with the Fampridine if this is life after two weeks without it. Kath (confused.com) x
It’s now been over 5 weeks since I completed my trial of Fampyra and I’m very disappointed (…and quite angry with myself) to report that I’m continuing to experience worse foot-drop, more acute balance problems and more severe spasticity than I had before this trial.
Purely personally, I’m sorry I tried this drug at all as, not only were the benefits only marginal, but I’m now finding walking more difficult than ever.
That’ll teach me to be optimistic about medication …again!!
Dom, Devastating news. l hope the word gets out - and anyone else thinking of trialing it are put off - including myself. Lets hope that in time you get back to how you were before. But l know how your mindset is - if you don’t try it how will you know - and what have we got to lose.
Best wishes to you
Liamsquash / amily10. - wondering what type of ms you have got ? I’m hoping to start fampyra in a few weeks but now somewhat concerned. Best wishes. Tony
Since finishing the Fampyra trial (to which I had a good response), I never got to take it again. A blood test showed that my kidney function (eGFR) had dropped from 84 to 26 . My doctor said that if it dropped much lower I would have needed dialysis. The only new med. that I had taken was Fampyra and I have never had problems with my kidneys before. The patient information does say that you can’t take Fampyra if you have reduced kidney function. In the last few weeks I have also had a severe relapse affecting my speech, swallowing and walking. I have just finished steroid treatment. I don’t know if the problems with my kidneys caused the relapse or if the Fampyra is linked to my poor kidney function, but like Dom, I am wishing that I had never started the Fampyra trial. Tony, it was thought that I had just become secondary progressive, but after this latest relapse, they have decided to put me on Copaxone so I suppose I must be still RRMS. I was on rebif up until about 6 months ago. Amily x
Gutted for you Amily.
I know my kidney function is not too balanced (had tests earlier in the year after MRI showed a problem), I’m at about 52 & 48% so I make more effort to drink lots of water and take a cranberry supplement - huh, like MS doesn’t cause enough bladder problems!!! I’m just extra cautious now so I guess apart from the ridiculous cost, it’s something else to be wary of I suppose.
With so many unknowns it really doesn’t make me too hopeful about it. I guess I’ll look again iif there’s much more decline on the walking front.
I truly hope you have a good recovery Amily hugs
Thank you Sonia. I’m just concentrating on getting over this relapse now. Amily x
I’m SPMS, and have been at this ‘stage’ for almost 3 years now.
No doubt Fampyra can be a huge help to some, but based on my personal experience of the drug, I’d be very reluctant to recommend it.
I certainly don’t think anything like enough mention is made of possible detrimental effects to enable potential users to weigh-up the pros & cons properly.
(My own neuro simply didn’t know the potential hazards …bit of a worry for future meds!!)
Best of luck with it, Tony, hope it proves much more successful for you
Amily/Liamsquash - Tks for replies. I’ll have to make a decision about fampyra in a few weeks - the jury’s out ! Liam concerning footdrop - I had a support around my ankle which was attached to my shoelace area. Think it was called a “foot up” . It worked quite well but when my calf muscle weakened on same side I got a “musmate” . This has a belt around waist and shoulders with a thick adjustable rubber band down to centre of foot area. There is then a strap that connects to cente of foot over shoe. All can be concealed under shirt/trousers. I’ve modified mine and attach to foot area onto a loop of thick wire fixed through forward shoelace eyes. Helps me a lot . Got both items from local physiotherapy for free. Best of luck Tony
I have read the recent posts and I’m sorry that some people have had a rough time. My experience is very different. Noŵ four months in, my walking , bladder (now almost normalised with the addition of Betmiga) and fatigue have all vastly improved. I hope everyone can have the opportunity to try this drug. I know several people who have been taking this drug for years (available from the USA since 2004) with no negative effects. I’m not sure of reports that people are worse, than they were before, after stopping Fampyra. It’s very difficult to remember accurately one’s condition weeks or months ago. It would be a great pity if ms people deny themselves Fampyra because of a few, possibly inaccurate, reports. John H PS - I used a ‘Foot Up’ brace to help my foot drop for the past two years. It’s been in a drawer since I started on Fampyra.
Johnh, Are you still on the Fampyra drug. As all the ‘problems’ are with people who have done the trial then stopped taking it.
l have read the warning that if you stop taking the drug your condition can most likely be worse then when you started.
Life does not get easier.
So pleased with your results with the Betmiga.
John H, I would have carried on taking Fampyra as I had good results on my trial. My walking and fatigue levels were much improved (see my earlier posts). However, my kidney function has dropped from 84 to 26 which means that I am unable to continue. I would not wish to put people off trying this drug. I think that I have just been unlucky with recent events. However, I do think that it is important that people should read about as many experiences with ‘MS drugs’ as they can, in order for them to make up their own mind. I know that I was keen to read about other people’s experiences before I decided to take Fampyra. My report of my experience with Fampyra is not inaccurate but truthful. Amily x
Snow leopard - no problem. I was trying to be humorous. Ref fampyra johnh says above that it has been available in the USA since 2004. Surely with shared information these days our neurologists would be well aware of any negativities, especially long term problems after coming off the drug as some people have been reporting. Tks tony
Fampyra definitely provided slight benefit …but only ‘slight’. Certainly not £200 per month’s worth of improvement.
Then, as soon as ! completed my trial, it became quite clear that after only 1 month, my balance, spasticity and foot-drop were all worse than before the trial.
Have you, or any of the users that you know, ever come off this med and personally seen whether it causes any sort of ‘depedency’ ??
(By the way - there was absolutely no effect on my bladder - good or bad!!)
I should have explained that I tried Fampyra (Fampridine) about five years ago for three months. It didn’t do anything for me, good or bad, so I stopped taking it. However, my mobility and fatigue wasn’t nearly as bad as it has become. Now that Fampridine (Fampyra is a sustained release version) has become available I decided to try it again. I’m fortunate that I’m a responder. When I got this drug from the USA the patient leaflet advised stopping the drug for a week every few weeks. So there must be a history of people stopping and starting. The drug isn’t new. It’s been used for years, to treat patients in the USA , who have spinal chord nerve injury and is sometimes able to reduce paralysis. John H
But why are you getting your Fampyra from the US when it’s commonly available (albeit privately) in the UK ?
I honestly thought the purpose of the free trial was to find out whether or not a person was a ‘responder’ ? (If I’ve misunderstood this, it certainly isn’t the first mistake I’ve made and you can be pretty sure it won’t be the last!! )
Look forward to your advice.