I’ve posted before that I was on 60 or 80mg simvastatin tablets for 30 months with absolutely no slowing down of my SPMS
symptoms, but later found out it can cause muscle weakness - which is one of my ms problems.
As my Simvastatin is a trial I’m not sure if I’m on a placebo or the real thing ?
I’ve been on the trial for over 2 years, it’s a 3 year trial but due to the Covid it might run on for an extra year ?
The impression I get when I have my trial assessments is that the feedback is not promising for Simvastatin as a drug to slow progression, so much so that I’ve been offered Siponimod
would the siponimod alter the out come of the trial - or are you stopping the simvastatin?
Well that was a question I asked.
If I start Siponimid wont it throw a spanner in the works for the Simvastatin trial, the reply I had was “it would be unethical NOT to offer a drug that is already proven to slow progression just because you’re on a trial for a drug that is some way off coming close”.
From that one sentence I thought to myself that Simvastatin is not what they hoped it might be in slowing progression in SPMS.
So I’m a month into Fampridine and I have mixed feelings.
Is it the wonder drug to help walking ?
I can only speak about my experience, and I would sadly say NO.
A week or so into the trial I thought maybe, just maybe my walking felt a little easier, certainly no improvement on distance, but the odd occasion where things felt a smoother, but this was infrequent and random.
The last few days I’ve felt that my walking, in particular my right leg has definitely been been a struggle, to the point that it is worse now than before I started taking the drug ?
As the Fampridine was a trial for a month it ran out today, the next prescription could take about a week to arrive because the repeat prescription needs to be set up, which was agreed when the clinic offered me the chance to try it a little longer.
So I’m now at a bit of a cross roads !
I might be over thinking things, but my right leg is definitely worse this last few days, even though I was still on the Frampridine, up until last night.
The clinic said I should feel a decline once I stop the drug, yet I’ve felt a decline before stopping it ?
So has the drug actually started to make things worse, that is my concern !!
I cant blame this on the gap between prescriptions because the leg has got worse whilst I was still taking it.
So my thoughts are, if I find my leg(s) getting worse over the next week or so (without the Fampridine) is it because I stopped taking it or because its now already caused further issues, hence my right leg getting worse before stopping it, .or I’m just having a few bad days/weeks and the Famridine is not to blame ?
Last thing I want to do is start taking it again and find that it’s actually causing more damage, which some other MS’ers feel about the drug.
The physio at my clinic who assessed me after the 3 week trial period commented “theres been some reports that it causes premature nerve damage, but this hasn’t been clinically proven”
Clearly that is now a concern.
oh what a place to be in! i don’t envy you your decision - it sounded so good to begin with, the answer to alot of prayers. Now after your experience - i don’t think i want to try it! although i know everyone is different.
Good luck with whatever you decide.
Without doubt right leg worse over last 48 hrs.
This could be because I’ve stopped taking the Frampidine but I felt that the leg was building up to something nasty 3 or 4 days before stopping the drug.
My feeling at the moment is not to start back up on the drug when new batch arrives, I just have this thought in my head that it has caused this latest problem ?
I was not like this at my pre-assesment before starting the drug, I then take it for 3 weeks and feel very very little improvement, and on the last week of taking it I start to get issues, which have got worse since stopping.
Its like as if the drug has started something but you need to stay on it to help with what its started, if that makes sense ?
My wifes thoughts are that maybe it’s best to just deal with the MS as it is, don’t mask any issues with this drug, which is exactly what Fampridine does, her feeling is I wont know “in real time” what the MS is doing in the background.
I can see where she’s coming from and think now after trying the drug for a month it’s a fair point I think.
Another concern now though is that if this latest issue my right leg was caused by those 3 weeks on Fampridine, is it permanent ?
I guess you are gonna have to wait and see. Do you think physio would help? What does your ms nurse/neurologist think?
Another old post from the Barts Blog, but the comments made by Illustration Group and replies, might be interesting.
I hope things start to settle down soon.
I’m going to ring MS clinic tomorrow,
I dont think physio will help to be honest, this feels like when you get a flare up and your really struggling with leg lift, balance ect, but I’ve done nothing to bring on a flare up.
Thanks for the link, theres a lot of comments/ experiences that are very close to my own thoughts.
So a quick update.
MS nurse not convinced the Fampridine has caused this flare up.
I’m feeling far worse last couple of days than I have in a long time.
Basically I was advised to leave off the Fampridine when the new prescription arrives “just to see if things settle” !
To be honest that was my intention anyway.
So lets hope this is a temporary flare up, fingers crossed.
So still having issues with right leg, its very very heavy, no strength, and probably its the worst its been in a long long time.
I haven’t received the new batch of Fampridine yet, but when it does arrive I’m going to wait a bit longer before deciding whether to go back on them or not ?
I’m still not 100% convinced that the drug is not to blame for this latest flare up.
One thing that does keep me thinking though is what the consultant from Barts writes in the link Whammel shared on here.
The consultant basically makes the comment that Fampridine could be causing the damaged nerves to over work themselves, which in the long term could possibly end up causing even more premature damage to the already damage nerves by simply over working them.
It’s something that makes sense to me, if something is already damaged why cause even more damage by over working it/them.
However, this then got me thinking that surely if that might be case, over doing things in general or even exercise might have the same outcome.
We are constantly told to exercise if we have MS, but at what point could exercise end up over working the already damaged nerves, just as in the same scenario as Fampridine, and be doing more harm than good ?
Shouldn’t we actually be protecting the damage nerves from over working, instead of stimulating them ?
Especially by using a drug that is basically masking the damage so that we feel we can physically do more !
I regularly use an exercise bike, just to try and “keep the flow” of signals getting to my legs, I dont even know if it’s doing any benefit, but in my mind it feels like I’m at least trying, but when I get off the bike I’m absolutely on my knees, so perhaps these little exercise sessions are in fact causing more damage in the long term than actually offering a benefit ?
Just a thought.
Jactac it is tough when a flare up hits you with no explanation of how it occurred. I was the same for the last month,my right leg is tighter and heavier than before and has slowed my walking down to snails pace. Very frustrating it is… I have noticed that the humidity is high the last few weeks and that makes things way worse for me anyway. As for exercise I find once my body temperature rises then I’m worse than before but once I cool down im fine again. I need to do a bit of exercise for strength and heart health too. If you don’t use it you lose it is what a physio told me a few years ago so exercise is important for everyone. A slight rise in body temperature does cause a pseudo relapse but its only temporary until the body cools down or the other factors causing it are addressed ie. Infection,virus,uti etc. See how things go for you with the flare up and decide then about fampyra.
Ok so its been a while since I mentioned my Fampridine trial.
Basically I did the months trial, towards the end of the trial I felt that my right leg felt worse, I rang the clinic to explain was told that it’s up to me if want to continue or give it a miss until I feel I’m ready for it.
I decided to see if my leg settled back down, it’s now around a month since stopping and I feel that my leg is probably back to where it was before starting the Fampridine.
So, in my head now is, was it the Fampridine or just a flare up caused by something else.
I’ve decided today to give the drug another try, I’ve just taken the first tablet (9.00am) and will carry on with the 12 hour gap dosage.
I’m going to try this for another month and see what happens this time, however if I feel that things are not right again I will stop the this 2nd trial indefinitely.
I’m also due my 2nd covid jab so that might throw a spanner in the works as it hit me side ways on the first jab.
Hello Jactac.
Would you mind me asking for an update on your journey with the second trial with the medication after the short break you had?
Hi All,
I’m on the Simvastatin trial in Swansea and I too have been taking Fampridine for just over a year and after a noticable improvement in my walking in the first month, I waited at least a month for the tablets to be delivered ( during which I noticed deterioration in my walking) and when i restarted the drug, the improvement did not return. However I have continued with it without any side effects although my right leg has continued to become more stiff and numb and causing me to trip and fall.
I’ve also qualified for the Siponimod and will soon receive an on- line counselling prior to starting on it. I’ve read the information booklet and feel very concerned about all the possible side effects.
Does anyone have any experience of taking Siponimod?
Hi,
Sorry for the very late reply but I dont come on here much these days.
So I’m back on Fampridine, have been for a few months.
Personally I dont think its doing anything.
I was chatting with a lady at the clinic and she said that at first she felt an improvement but after a few months of taking the drug the improvement settled back to where she was without taking it.
She’s now decided to come off it, firsty because of what I mentioned about it not giving an ongoing noticeable result, but also the hassle of timing the drug in between food and meals times just outweighed the benefits.
I can see exactly what she means.
My clinic says I was a responder when I was put on the initial trial to see if I could have it on prescription, hence being allowed to have it, but if I’m honest the day they tested me and said I was a responder was no better than my usual good days without the drug.
I’m waiting a further MRI to see if I can start Siponimod, my last one was clear so I was not eligible at that time.
Apparently you MUST have active brain lesions to be allowed the Siponimod.
Currently I have no brain lesions at all, whether active or inactive.
My consultant reckons it’s pretty unusual not to develop any brain lesions at all, especially as the years go on after developing MS ?
This is why he’s arranging another MRI further down the road.
The wife seems to think it’s because I have no brain !!!
I finished the Simvastatin trial a few months ago after being on it for 3 years.
The trial is being extended but my consultant said I couldn’t continue into the extended bit as I had progressed slightly, which is not what they want when the drug is supposed to slow/stop progression.
I cannot work out though the reasoning behind taking people off the trial if they progressed as there’s no way of calculating if the drug works or not if people are removed before the final findings of the trial.
Even my consultant totally agreed with what I said.
If you have 800 people on the exact same trial, none of them knowing if they are on placebos or the real thing, and the trial is extended for another year, why after 3 years are people who have progressed slightly removed BEFORE anyone knows if they were taking a placebo or the real thing.
I just can’t get my head around the thinking of it ?
So I was on the trial for 3 years, they say I’ve progressed slightly over the last year, the trial is extended for another year, but I’m removed without nobody, not even the consultant knowing if I was on the real thing ?
Surely it makes sense to go through all the data when EVERYONE finishes a trial at the same time ?
Hi everyone, I’ve been taking frampidine
for 2/3 weeks now, iv’e had many of the side affects, headaches, dizziness, feeling faint, and insomnia, but they only lasted
a few days, but I’ve been experiencing chronic back pain (kidney area), my GP has put me on antibiotics, and the pain has eased. I have had MS for 37 years, and have always fought against it, I try and keep as active as possible, my MS has stayed the same for all these years, I think my mental positivity has helped me and has kept me going. My left side is very weak , I have muscle loss and numbness on my left side, but since taking frampidine I can suddenly wiggle my toes and my foot drop has slightly improved, I can now turn my foot outwards and circle my ankle , it’s obviously still very weak due to the muscle loss, but being able to move my foot for the first time in 37years has astounded me, also the heaviness in my legs (wading through mud sensation) had gone away, I have high hopes for this medication, only time will tell, I wanted to share my experience as I was diagnosed very young and I felt like my outlook on life was very grim, but it isn’t always the case.
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Yeah, hi i thought i was on a placebo for fampridime then tried changing the times taken to a bit earlier and earlier. Big mistake!
Then it started. Debating back pain.
Only had 6 tablets, found out it was no placebo. During the twilight time no gp surgery open between dec 31 and jan 2nd. Anyway doc said im not allowed back on it, i wanted to try just one a day. Doc say No.
Anyway Im glad it works for some peoples.
Im away to try KCR in two days. Time my body was rebalanced.