Fampridine & Siponimod

So, had an appointment today with my consultant to to assess how I’m doing on the Simvastatin trial, I explained that I feel I’ve maybe got a bit slower and walking feels more of an effort.

The exact oppsite to what this trial is supposed to achieve, however until the end of the trial we dont know if I’m on the actual drug or a placibo, so it’s a case of carry on and see what the end results say.

Anyway, during the consultation my consultant threw me a curve ball, apparantly the Welsh Governmant have aproved 2 new drugs in the treatment of MS, Fampridine & Siponimod allowed on the NHS.

The Fampridine is supposed to help with walking speed, balance ect, and Siponimod to help the slow down the progression of MS.

I was offered to trial both !!

The Fampradine I can start as soon as blood tests are back, but the bloods must show a good kidney function, then if all is good with the kidneys I can start on the drug and will then be assesed over a month to gauge improvement, which must meet a certain level of improvent to justify staying on the drug, fingers crossed.

Apparantly improvements are pretty much obvious within 2 weeks of starting on the drug.

Some of the video footage that was shown of patients at the clinic whilst on the initial Fampridine study was remarkable.

Starting on the Siponimod will be a few months away as some MRI scans are needed first, which must show the MS to be either currently active or at least show more liesions have developed.

Has anyone here had any experience with any of these drugs ?

Any advice appreciated.

Thanks

1 Like

Hi,i’m waiting to start siponimod (also called Mayzent) Its a new drug only licenced in October last year but as far as i know no one is on it yet (apart from those on the trials) hopfully next month.

I’ve not heard of Fampradine but it sounds just what i could do with, so will be asking my ms nurse next time - let us know how you get on

1 Like

Reading on here about Framridine it seems as though the general feeling is that people feel they were worse off after stopping it than before starting starting, but my consultant said the drug does nothing at all to slow progression, it just masks the symptoms, so the reality is that when someone stops taking it they end up where they would of been had they not taken it.

The drug hasnt made them worse, its just that you’ve fallen back into the level of progression that you would of been anyway.

If that makes sense ?

Yes it does, what are the side effect like? maybe if they arent too dad you wouldn’t need to come off it

My consultant basically said if he was siting where I was he would jump at the chance.

The most common side effect is urinary tract infection, the most worrying is seizures but he said it’s uncommon.

interesting and worth investigation. my worst symptom is balance and weakness in leg, so if something would help i think i would go for it. i will be asking my nurse when next i speak to her, thankyou

what is your opinion? areyou currently on any drugs? and what are your main symptoms?

take care, A

Currently taking Baclofen, Vit D3, Vit K, blood pressure tabs, and other bits and pieces.

I’ve played around with Sativex, but I found it useless if I’m honest.

I’ve also tried Gabapentine, Pregabalin, Clonazepam, Amitriptyline, Amantadine, all without success.

Some people suffer pain with their MS, I don’t, its just the weak heavy clumsy legs.

My biggest symptoms are weakness in both legs, right one is worse, I also have numb fingers, my balance is not too bad but certainly not great, I couldn’t walk a tight rope . LOL

In regards to the Fampridine, I’m like 95% in favour of trying it, the concerns are having to come off it and then trying to accept that sudden drop in mobility, also the timing of taking the drug, 12 hours apart is apparently critical, it must also be on an empty stomach, which again was pointed out as very very important, so its a case f adjusting meal times at home and at work.

Some drugs such as Baclofen can increase the risk of seizures when taking alongside Fampridine, so that may need looking at as well ?

If I pass the kidney test I think I’ll try it for the month and go from there.

The kidney test results again are critical to being allowed this drug, your results have to be on the higher end of normal.

If they are you will then be offered the months trial, and whilst on the trial your mobility will be reassessed, I think it has to be at least 20% better than pre trial.

You also have to be able to already walk a minimum of 5 mtrs (with or without an aid)

The rules are pretty strict to get the drug on the NHS.

As i am reading your post, i cant believe its me! 12 months ago i hated the idea of taking medication, only taking paracetamol when really needed. now im waiting for siponimod to be available and liking the sound of framidine even so far as thinking how i would take it 12 hours apart (probably 7 or maybe 8am and pm for me) i think i would take anything put my way!

Your ms sounds like it is effecting you in a very similar way to me, how long have you been diagnosed and with what type?

its great you still work, what do you do and have you had to change any areas of work to fit with your ms?

sorry if im being nosy - just ignore any questions you dont like,take care, A

Ask anything you like, its fine.

I was diagnosed 2013, it started off with weakness in my left leg, I was on a night shift when all of a sudden my left leg just collapsed, over the next few days I started getting odd sensations on parts of my skin, cold things like a spoon run under a cold tap felt very hot, but only on certain areas of my skin.

I went to the GP’s because my leg was getting a bit worse, I was told it was a trapped nerve, but as it got worse over a week or so, I returned to the GP, saw a different GP, and mentioned that my sister an first cousin both had MS, I could see straight away that the GP was concerned, in fact she rang the MS clinic there and then whilst I was sitting there, she explained my symptoms and family history, I was offered an appointment the next morning.

When I saw the consultant next morning he looked back at an old MRI scan of my brain that I had done many years ago before MS was suspected because I had been getting strange sensations in my hands,like I was wearing gloves when I wasn’t, anyway the consultant at that time said the brain scan was clear and said it was probably carpel tunnel with my hands, so move forward some years later and this new consultant agreed that the brain from years ago did look clear, but the scan had just about picked up a lesion on the very top of my spine, which the original consultant missed.

I then had more updated MRI’s and a lumbar punch, both confirmed MS in my spine.

My consultant now thinks my MS most likely started many many years ago when I was experiencing the odd sensations in my hands, maybe up to 20 years ago ?

so I was initially diagnosed as RRMS, but over the years that has been changed to SPMS.

I’ve not actually had any obvious relapses since being diagnosed in 2013, just a slow “transition” in SPMS.

I do still work, which for me is something I will keep dong until I just cant, I’ve reduced my hours and changed roles.

When the MS struck I was working shifts on furnaces, melting alloys, I’m now working for the same company but in the lab testing the product, no shifts and a reduced hours.

I have to say, my company have been fantastic.

Personally I feel that having that push to go into work has helped me physically & mentally to cope with my MS, however there are days hen I should of perhaps stayed at home, but again that’s the stubborn side of me coming through.

Even around the house I will still try to do things like DIY that I’ve always done.

Don’t get me wrong, I’m far far slower and theres certain jobs I just cant do, and I get very frustrated if I have to give in and have someone else do things that I would find a breeze to do a few years ago, but I’ll still push myself first.

I mentioned earlier that my sister and cousin have MS, my sister is RRMS and is far worse than me and my cousin, she had a bad relapse about 2 years which was totally life changing, but even before that she almost gave up the fight as soon as MS was confirmed, which I find sad.

My cousin is also RRMS but like me she still tries to be her old self as best she can, and like me she’s still fighting the MS.

I really do think that trying to be stubborn with MS helps mind and body, if that makes sense ?

yes it does, and im so sorry so many of your family suffer. my dad had a brain tumor, but aside from that my family are clear. my sisters mother-in-law had ms and she spent many years in a wheelchair and died 2 year back. when i was first diagnosed she was all i could think about.

i was diagnosed may last year with spms and they think ive had ms for about 22 years, ive had symptoms over the years but they were never connected.

i work full time in pharmacy and im actually doing more hours now than before covid, but i have dropped a few since september. my boss and collegues are great aswell and it makes all the difference. i am thinking of dropping a few more after covid relaxes its hold. the trouble is by the weekend in shattered and i spend the days off doing very little

i do agree with you, you cant give in to ms and let it rule your life. your job sounds quite physical -make sure you look after yourself, take care, A

Hi Jactac,

I’m on Famprdine in England have been for 4 years. Also on tizanidine, baclofen, solifenacin.

I was timed walking a set distance then had a trial for a month of famprdine. Timed again and was slightly quicker. I had fewer falls when was taking it so thought it was worth continuing despite the cost of £186/month.

I take at 10.30/22.30 which works for me.

Mind, my walking has deteriorated a lot in the 3 years that I’ve been taking it. I tried one tablet a day and could hardly walk at all. Think you said that it just masks the deterioration. Just wish NHS Engand would approve it but think it was turned down recently.

Have a go and see how you get on.

Take care

Jen

Just had a call from my MS nurse, he said my kidney blood test came back all good.

So I’ve decided to start the months trial of Fampridine from this Friday, I’ll be assessed in 2 weeks to see if theres an improvement.

I’ve read lots of feedback from patients who have tried it and the feeling I get is that it’s worth at least trying it.

I also feel that from what I’ve read any negative reviews are when the drug is stopped and the patient feels it has made them worse, but my opinion is that this is where the progression would of been if that person hadn’t started the drug, I don’t think (hope) the drug actually makes the progression any worse, I certainly couldn’t find any research that suggests it does.

My MS nurse was very upbeat in regards to the patients at the clinic who are already on the drug, some of whom have been taking it for a very long time with no adverse issues.

Anyway, that’s my plan, give it a month see what happens, fingers crossed !

Good luck, i hope it goes well - keep us posted, A

There is a fair bit of information on the Barts Blog and the odd suspicion, but no real evidence. It looks to be a good drug if it works for you, and not so good if not. Hopefully, you will get some decent improvements.

#ClinicSpeak & #ResearchSpeak: is long-term fampridine good or bad? – Multiple Sclerosis Research Blog (multiple-sclerosis-research.org)

1 Like

Thanks for the link whammel.

The write up certainly seems to offer positive tones.

I noticed it was written almost 4 years ago so perhaps there may be more info on the long term effects.

My MS nurse did say that initially when the drug was trialled a few years ago some patients were put on double the dose and it was found that a small number of the patients on the double dose had suffered seizures, but the patients on the half dose suffered far less issues.

Apparently it is the half dose that is used today.

Another thing that I was told is if I’m a “good responder” I should see an improvement within 3 or days, thats how fast this drug works.

I’ll give it the month and see how things go, if after a month I see only a slight change I may just leave it until I feel it may be of more use.

My consultant said I would need to see an improvement of around 20% in mobility to justify staying on it ?

Thanks again for the link.

1 Like

I’ve on the Simavastatin trial as well and just spoke to them about my next appointment in March. They told me about Siponimod and that they’ll make my MRI available to my MS team to see if I’m eligible for it so it all sounds quite exciting! I actually feel as if my walking has been better whilst on the trial but whether it would have been anyway or I’m just getting the placebo effect I have no idea. Regardless it feel as if there are suddenly a few more options for people with SPMS and that can only be a good thing. I hope everything goes well for you, let us know how you get on!

I’m now almost a week into the Fampridine medication, I don’t feel that my mobility is a great deal any better if I’m honest, but perhaps I’m expecting too much too soon ?

My consultant said I could try Siponimod in a few months once I’ve had the MRI scans.

I have to go back for an assessment March 12th to see if this Frampidine has worked !

Without doubt I feel that being on the Simvastatin trial has opened doors to other options, in fact my consultant words were, “you get a bite of the cherry, before others”.

My advice to anyone with MS is to put their name forward for these types of trials.

So just had a 3 week assessment of Fampridine.

Out come was that the clinic offered me te chance to continue.

My personal feeling is that I dont see that much of an improvement, yet others around me feel that they can see me walking a bit quicker & smoother.

Maybe I was expecting a complete new me !!

Anyway, I’m going to try it for a bit longer, probably 3 months, and see how it goes.

My current tablets will run out next Thursday, but I wont get the next prescription for a further week, so that gap in between prescriptions will give a good indication if this is working.

After that, all prescriptions are funded via the clinic and supplied by post direct from the manufacturer, which surprised me.

Apparently that’s how these types of drugs are paid for here in Wales ?

Its the same for siponimod for me. I was told the tablets (if i am eligible) would come direct to me. I asked if I could use a local pharmacy and was told no, its all done as part of the funding at hospital level - the good news is that I wont have to pay prescription charges either

Hi Jactac,

I’ve been following this thread with interest.

Glad Fampridine has helped a little, even better that your prescription is paid for.

I get mine delivered by courier every month. Get it delivered to my work as it has to be signed for. Works really well for me.

Good you’ve got a gap, may see some difference.

Take care

Jen