So after a visit yesterday to my MS clinic the consultant has said theres a “hint” that I’ve gone onto secondary progressive, which I’ve already thought for about 2 years as I’ve never actually had a confirmed relapse yet my symptoms have gradually got worse.
Thinking back to my first ever attack about 4 years ago when I was diagnosed with Relapse & Remitting I never really got back full 100 % healthy, theres was always a small level off weakness in my left leg or other little symptoms hanging around, which over the years have gradually got worse and my general walking has deteriorated, but without having any full on relapses.
So anyway, the consultant has decided put me on Baclofen to help with stiffness in my legs alongside Gabapentin which I already take anyway.
As for anything to slow down the secondary progressive, well apparently at the moment theres nothing that can be offered unless there were relapses as well, which theres not, at least that’s how I understand it ?
He did say that there are trials ongoing that look very very promising but were not yet available on the NHS.
The Gabapentin I take (300ml 3 times daily) has not given any side effects, and if I’m honest no real benefit yet either, but I’ve only just gone onto the higher dosage.
So as for the Baclofen what am I going to expect from it ?
The consultant said to start on a very small dose at first because theres “a small window” where it either works or gives adverse affects such as very weak muscles, basically its a bit of trial and error to get the dosage right from what I can understand ?
Baclofen is a muscle relaxant. So while it decreases excessive ‘tone’ or calms down spasms, it can also lead to weakness in the muscles. So can impact on using the very muscles you are taking it to help because you need some tone in order to be able to walk. Some people find that it has a very big weakening effect on them. Other people take it and it does what they want without too much weakening of the muscles.
It comes in 10mg tablets. So the idea is to start with one tablet and see if it works. If you have spasms at night, take it then. That way it won’t make your legs too weak. Only increase it very gradually.
I’ve been taking it for years and don’t think it has a particularly weakening effect. When I forget to take it I’m plagued with spasms. So I can take a total of 60mg through the day, mostly in the afternoon and evening when I’m not going to try to walk anyway.
Maybe try the Baclofen at a time when really crappy and weak legs aren’t going to be an issue, just in case. So if you have to walk, or drive say, don’t choose that day to test out the Baclofen! I.e. a weekend when you aren’t about to go out shopping.
So if Baclofen relaxes the muscles, how does this help with the heavyness ?
I can see how it would help with the stiffness but not that heavy, walking through concrete sort of feeling.
And also if the Baclofen does relax the muscles surely this will then have an adverse affect on walking, ie no strength to walk due to the muscles being too relaxed ?
Generally I think people take it everyday. As for whether it will help with the heaviness, you can only try it out and see. It’s possible that it will loosen up your muscles so they’ll move easier, but will still feel heavy. Which means it won’t have done all that you way it to. Or it may relax them so they don’t feel as heavy, and thus do what you need. Or it might make your legs feel too weak to walk properly - the worst of all worlds.
So, it’s one of those drugs that suits some people and does what they want it to. And really doesn’t suit some others. You can only tell by trying it. And trying at a very low dose, increasing it very slowly and see if it works for you.
I should give it a go. 10mg is a very low dose. And that’s where you’d start from. Personally I wouldn’t be without it. It does do the business for me sorting out spasms. And I really know when I’ve forgotten a dose. Baclofen does have quite a short wash out period, so if you give it a go and don’t like it, you just stop. It’s only when you’ve been on a larger dose for quite a while that it’s recommended that you come off it slowly. But that’s the same with most drugs.
But only you can decide what’s for you and what’s not.
I’m hoping it will help with the heavy ness and stiffness i my legs.
Only worried that my legs may become weaker than they are now, as sometimes I get a surging sort of sensation in my thighs as I’m walking that tends to give me a “wobbly” feel as I walk along.
God it’s hard to try and explain how this bloody MS affects you !!
Jactac, how are you finding Baclofen now? Any good?
I ask because I saw Neuro yesterday and on asking her about her thoughts of prescribing it for me for the pain and stiffness in my knees. mainly in the mornings and it eases a bit as the day wears on. She had been about to suggest it to me anyway and prescribed 10mg daily. She explained it can have a drowsy affect on some people, so if I take it at bedtime it may help my insomnia as well as my morning pain/stiffness. Double bonus if it works for me!
Spoke to my MS nurse and he said wait a little while as I’m struggling with the Amantadine that was given the same time but for for fatigue.
So basically I’ve withdrawn from the Amantafine for the moment and waiting for it to flush out of my system, then I’ll give the Baclofen a go.
The MS nurse said the same, that it can have a drowsing affect, so it’s a bit of trial and error really because the last thing I want is to become weaker and more fatigued after stopping the Amantadine, then again I didn’t find that Amantadine did anything for my fatigue, but just gave me a banging headache with a strange “not with it” feeling, and my legs actually felt more wobbly when walking.
I’ll certainly write up how the Baclofen went as soon as I’ve started on it, probably next week.
Thanks for that. I only started Monday night. I have to say it seems to have had an immediate effect on my knees. No pain and no stiffness. Can it have such an immediate effect? Don’t know. Time will tell I suppose.
Thanks for posting this jactac. I’ve been struggling with muscle spasms to some tune today. Until now they’ve been relatively infrequent and more annoying than uncomfortable or painful. When I asked about muscle relaxants some years ago that neurologist told me I was better off without them. I did try gabapentin about five or six years ago, but they turned my legs to jelly leaving me unable to walk, not that I can walk much anyway and certainly not without foot brace and crutches.
I’ve found all the responses to your post so very interesting and helpful. Thanks everyone
Personally I think it’s a case of hit & miss with most meds given for MS symptoms.
I’ve tried Amitriptyline & Carbamazepine for tremor like sensations in my thighs when walking but both meds did nothing for me, I’m now taking Gabapentine for the same symptom, but to be honest I still have the tremor sensations, some days all the tme other days now and then, whether this is the Gabapentine reducing the symptom or just the fact that the MS is playing up more days than others I dont really know, so I’ve stuck with the Gabapentine just in case.
Lately I’ve also tried Amantadine for fatigue but within days I felt terrible, the tremors in my legs were very active, yet when the drug wore off in the evenings I felt better, so I decided to drop this drug after just a week.
I’m now waiting a week before trying Baclofen for stiffness in my legs, I’m also hoping that it might help with the fatigue a bit because my way of thinking is, that if your not struggling with heavy stiff legs then your energy levels might be a bit better ?
Like I said it’s all trial & error with MS and the meds we take.
