Baclofen and advice on walking etc

Everyday living
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Hi,

I am just looking for feedback on baclofen and people’s experiences. I’ve been prescribed 10mg each day, however I have decided I am going to start on 5mg a day as I have read about jelly legs etc so I am worried about this happening, especially as I work in the community visiting many people/attending meetings.

I’ve been placed on it due to stiffness in what had to be my good leg (right) but now weirdly is definitely my bad leg. I attended physio and she said I definitely haven’t got drop foot, as I can hold them upright with no problem and do it automatically in a led down position. However she said the stiffness in my lower right leg and ankle is quite bad, and she was struggling to push my foot back towards my leg if that makes sense. She has given me exercises and I’m doing them but she said I might find some medication would help hence the baclofen. She advised I feel like I’ve got foot drop as I’m catching my toes but this is because the stiffness is preventing me from lifting it properly especially when fatigued, or I’ve walked a short distance.

Im on Tecfideria also, although unsure if this has made any difference. I haven’t had a relapse since 2013 but do feel I’ve definitely deteriorated somewhat… Would this mean I am possibly progressive or is some deterioration to be expected anyway. Is 5mg likely to help? Or should I just risk the 10? I’d rather not take a dose that’s going to make things worse.

Lastly, can I ask do people recommend sticks or crutches? And would I be better to use them before the leg becomes fatigued or is it better to use them from the moment I set out? To take the pressure of the leg? And to get further than I can without the stick?

Sorry about all the questions… Just trying to suss things out and make sure I can still enjoy things with these kind of adaptations to getting out and about etc?

Thanks in advance you lovely lot

Love Lisa xxxxx

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Hello Lisa

I think that people are a bit over scared of Baclofen. Yes, it can make your muscles weaker. But essentially, 10mg is unlikely to make your legs so weak that they won’t work.

In order to test it’s efficacy on spasms / stiffness, there’s not much point of trying 5mg (imo). I don’t think it’ll do enough to make a difference.

Personally, I’d wait until you don’t ‘have’ to do anything major. Choose a time when you already know your leg is stiff, but a time when you’re not just about to drive / go to work / walk half a mile or go out to the pub. Try 10mg and see if it does the job as far as the stiffness is concerned. I’ve been told Baclofen takes about 20 minutes to work, I think maybe a bit longer, but see what happens for you. (Write it down maybe?) And check whether you feel any more dopy, weaker etc at the same time.

That’s the drug mantra according to Ssssue.

As far as RR or progression is concerned, if you’re taking Tecfidera, you don’t expect to have relapses, otherwise you wouldn’t take it. Don’t forget that if the average relapse reduction rate is 50-55%, then some people will have no relapses, others may not be so lucky.

But of course, if you’re having milder relapses, then you could be gradually having some disability progression, without disease progression. Because we don’t all recover 100% from relapses, damage is gradually done to our bodies which makes us wonder if we’ve moved on to SPMS, that isn’t necessarily so.

Of course it could be that you have progressed. It seems to me that many of us, while we have RRMS, worry ourselves to death that we’ve now moved on to SPMS. Mostly we’re probably wrong. Stick with the idea that you still have RR until someone whose job it is to know, based on your MRIs and clinical testing tells you otherwise. That’s my thoughts about progression.

Your last point is about sticks and crutches. I remember wondering this question myself. (Years ago!) It almost felt like I needed someone to tell me to use a walking aid. They never did. I eventually bought a stick. And felt very self conscious using it. Later I graduated to one crutch, then two. And now I use a wheelchair. But that’s me. I think you should start using whatever kind of walking aid as you feel you need to keep safe. And stable. And stuff what anyone else thinks about whether you need it or don’t.

Feel free to disagree with me on any or all of these points. Or if anyone has any contrary views. Hopefully some of my mumbling and fumbling helps.

Sue

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Hello Lisa

i agree with Sue, 5mgs would have little effect. If your neurologist says 10mgs I would go with that and see how that works for you. My experience is that it took a lot more for me until my legs felt weaker.

If you decided to use a crutch be careful if your probed to falling, as your arm can get caught in the crutch and you could hurt yourself. I would recommend a stick but as Sue said do what you feel most comfortable with.

Best wishes

Ella

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Sue - a question - what do you mean by ‘disability progression without disease progression?’

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I think she means, your symptoms can sometimes tend to stick with you even after milder relapses, so you could be haing small milder relapses without confirmed relapse and find over time that your symptoms are staying with you somewhat.

So you would not necessary of progressed as in disease but your disability would of progressed, if this makes sense ?

I was told just last week by my neuro that theres a hint that things have progressed, yet in his confirmation letter to my GP he still has me down as Relapse & Remitting.

Like Lisa1980 I’ve been prescribed 10mg of Baclofen and I’m also concerned about weakness because of the weakness that already exists.

I’m going to start off on 5mg then work up just in case .

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That’s exactly what I mean. Many people remain RR but become slowly more disabled, (i.e. disability progresses) without becoming SP (i.e. disease progression). I have been really very disabled (i.e. more or less full time wheelchair user) for the last 5 years but still classed as RR. What did the damage was relapses without having the protection of DMDs, and steroids can only do so much to help resolve a relapse. I’m very side effect prone so I’ve had the dubious short term benefits of 4 different DMDs over the years without being able to continue on any. But it’s only in the last year that my neurologist has used the term ‘progressive’ in relation to my MS.

Sue

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In fairness its a not a very clear definition from the neuro’s is it.

As far as I’m concerned I’ve progressed its as simple as that !!

He can write R&R as much as he likes on my letters.

I am very frustrated and annoyed that over the 4 years that I’ve numerously rang the MS clinic and spoken to my laughable MS specialist nurse to explain that I feel I have my symptoms with me almost every day he has NEVER suggested DMD’s, in fact on the contrary, because he has said as I’m not having actual relapses then I would not be entitled to DMD’s.

What a load of crap, because minor relapses that are going on under the surface are doing just as much if not more damage than one off out in the open relapses, that could be controlled with DMD’s.

In my opinion they’ve got this system totally wrong in the way they scale people with MS.

I personally think more damage is being done than good.

I bet theres far more MS sufferers who are going downhill gradually with R&R who are having minor relapses, than there is one’s who are being stabalised who have had confirmed relapses.

Whether you have confirmed relapses or minor ones that slowly leave their mark we should ALL be offered any treatments that are available.

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Thank you all for the comments and advice. Yes that disability progression without disease progression makes sense, as maybe I have had mild relapses on the tec , but as I’ve well and truly felt these and felt crap when they have struck, maybe I haven’t due to the tec. I have had moments where I’ve questioned if I’m having one, done certain testers of my body etc, then ruled it out. But now you say that maybe I have and not been aware as its not how I usually would have felt. I would really like another MRI to see if there are anymore lesions etc there? I am due to see my consultant in June, but half thinking of asking my M.S nurse if she could ask him if I could have an MRI before this appointment which we could them discuss at my June appointment? I would just feel better to know what is going on?

Walking wise, I was thinking a crutch might support me better really. I haven’t used my stick loads, and maybe that is why I struggle when I come to use it. I haven’t had any falls touch wood and I’m not unsteady as such, just really struggle to lift my right leg when it’s tired and to bend at the ankle to walk. However I am now wondering if I should use it more and use it from the moment I set off out before I actually tire the leg out…maybe I would last longer and might actually walk further … Does that make sense?

The Baclofen, I will take your advice but I’m going to wait to try the 10mg when I’ve nothing on really. Thank you all again.

Xxxxx

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Hi Lisa
My MS Nurse wants me to try Baclofen (10mg) in the evenings to control the spasms in my legs.
It’s a form of spasticity, but the worst bit is (eg) when the ankle muscles are trying to rotate the ankle both ways at once.
We have tried upping the Gabapentin to 1200mg at night (all I take now) but it has not worked.
I am holding off (just) in case it affects my daytime “walking”. But that call to the nurse is not far away.

I went from one stick to two, two to a 3-wheeled rollator, 3 wheels to 4, all in the space of about three years (even with an FES to help with a dropped foot).
I think (if I were you) I would try elbow crutches; but, with what I know now, i would skip the idea of 3 wheels and go straight to a 4-wheeled rollator when I had to (easier to carry stuff around).
One thing about crutches (more than sticks) is that they do send out a message “Give this person space!”

Remember - you do whatever you have to, to cope. That is not weakness, that is winning.

Geoff

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I’m on 900mg of Gabapentine, (300mg 3 x daily) but I’m not really feeling a great benefit so I might start cutting back.

I’m due to start Baclofen anytime I want as my GP has been given to go ahead from my neuro, I’ve also had confirmation this morning that I can start Amantandine but not at the same start time as the Baclofen.

I might start with the Amantandine first and see how things go rather than start with the Baclofen first, mainly because I’m a bit concerned with my legs getting weaker than they already are if I go with the Baclofen.

Apparently its ok to take all 3 of these meds together, but it seems a strong cocktail to me, this is why I’m considering cutting back on the Gabapentine which I’m not that impressed with anyway.

My GP has suggested cutting back to 300mg 2 x daily at first, then 300mg 1 x daily, then finish with it all together.

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Hi jactac

Good plan to start one drug at a time. See how you go on that then try the next drug. And lots of people find that Gabapentin doesn’t do much. Once you’ve tapered down the Gabapentin, started on the Amantadine and seen how that goes, if you have stiffness or spasms, try the Baclofen. If you have pain still, ask for Pregabalin. It’s quite common to go from Gabapentin to Pregabalin.

And Lisa,

I second what Dr Geoff has said about crutches rather than sticks. Apart from anything else, if you use a stick and are in a shop, you kind of need to find somewhere to park your stick in order to do anything useful like pay for goods. And if it hits the floor you’ve then got a problem. Wheras with a crutch, make sure you get the kind that has a cuff so the crutch can dangle off your arm when you need to use that arm. If you don’t want a grey NHS one, and can afford it, look on the internet for nice crutches. I bought mine from Cool Crutches (purple). But there are many other companies.

Eventually I too went from crutches to a walker, and tried a triwalker first because it didn’t look as big and bulky, but ultimately they just aren’t as stable as a four wheeler. Topro are the best brand for 4 wheel walkers, but they are pricey. But it could be years, or never, that you have to swap from crutches to anything more heavy duty.

Sue

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An alternative to Topro is the Elite Care EC X-Fold at £70 from Amazon.
I bought one and liked it so much it went in the car, and I got a second one for the house.

Geoff

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I started on Baclofen at 5mg three times a day. I was unlucky as the wobbly legs started at day 3 and by day 4 my legs wouldn’t support me. I stopped straight away and now the strength is back but so are the spasms.

Paul

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It’s the Baclofen that worries me most.

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Hi Jactac,

I Hope you get in well with Baclofen! Just wanted to say both gabapentin and Pregabalin done nothing for my symptoms, just caused me more problems. I was the prescribed Baclofen at 5 mg and tbh felt nothing at all so stopped them too. Then at Christmas time put back on them at 10 mg and noticed a difference in stiffness almost straight away with no side effects whatsoever. If I feel ok I just don’t take them and then on bad days I do. I usually only need to take twice even on worse days so hopefully they work as well for you.

Take Care,

Kellyann

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Sorry that post was for Lisa the OP.

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Thank you for all the replies. I don’t feel any affect from 5mg so maybe Kellyann, I will try the 10mg. I will wait until I’ve not too much on just in case of the jelly legs. I do pilates and go on the exercise bike, which does help so on these days I would definitely want jelly legs…now that would be interesting :-). I like the fact you take it as needed to Kellyann…that’s nice to have the option isn’t it? Some days I am stiffer than others.

Sue, I have been looking at a pair of crutches on Amazon. Not expensive but have good reviews. I am a tad titchy so need some that are not going to be too big. Think I am going to get some and try them to see. I have been practicing around the home with my one stick and I can see how it takes some of the pressure of the bad side too, hence why I think using a stick, I may be able to get further. I’m thinking of holidays that we have coming up too, as we do walk a bit wishing these holidays…I noticed last year this was definitely more difficult. I’m not at the walker stage, but thanks for the advice on walkers. Useful for if that stage comes which it will at some point I’m sure. Luckily at present I don’t suffer any pain.

thanks again everyone xxxx