Forum

Baclofen

Hello. About a 2 weeks ago I stopped taking baclofen , because I felt it was making me feel week, I actually feel no different without it, apart from my constipation has gone, which is great, to many bloody tablets causes that, we take them because we are told too, but they only (think they might help) I really just don’t know?? Graham.

Hi Graham,

Each to their own, but speaking personally, there’s absolutely no doubt in my mind that Baclofen helps me. If I ever forget to take it, I’m in a right state within hours, and think I’m having a relapse! I can also tell when I’m overdue a dose, because I can actually feel it wearing off, and that I’m getting worse.

I’m not taking it “because I’m told to”, but because I’ve found by bitter experience that my walking deteriorates dramatically without it. I find it important to have as decent quality of life as possible, rather than as few meds as possible. Yes, I do worry about everthing I’m taking, and what it will - ultimately - do to my liver. But I also feel my quality of life would decline drastically if I stopped it all. So, for me, it’s a case of weighing up the lesser of two evils. I’m sure it’s not great to be taking all this stuff, but I don’t fancy a life of untreated pain and hardly able to walk, either.

You do know there can be serious complications of stopping Baclofen suddenly?

Tina

I’ve been taking Baclofen for 4 years I have reduced down to10mg twice daily. Too wary of stopping altogether in case the spasms I started taking them for recur. It’s probably just a mental crutch for me now. My MS is much worse than it was 4 years ago but I put that down to progressive worsening, the thought that it could be the Baclofen is very disconcerting. I understand Baclofen is used for various reason, we all have to weigh up the pros and cons and try to make the right decision for us. Sounds like you have had no ill effects of stopping Graham, well done you for giving it a go I’m just a bit of a wimp :slight_smile: Jan

I couldn’t get on with Baclofen at all. I found it made me very edgy, twitchy and generally a bit loopy! Much happier on Tizaidine. I wasn’t sure that was working until I missed taking it for a day and boy, I certainly found out the hard way that it was. I don’t get spasms - I take it for stiffness in my calves and lower back.

Hi guys, great comments, I was put on baclofen 15 months ago and I am so much worse since I started taking it, thought I was bad then, but would like to be back to that bad now, didn’t just stop without discussing it with my nuro people, and ms nurse, they agreed it could be causing the weakness in the legs, no way can I teach salsa at mo, not even the beginners, only injecting DMD and pregabalin, paracetamol ibuprofen so not totally drug free. Good luck everyone do what you think is best for you, not saying do what I do. Lol

Hi Tina. Thanks for your comment, and yes I agree at first I thought they were great told everyone at mstg, but if its working for you I’m pleased, hear is a quote from another site. Baclofen is a bit of a double-edged sword. It relieves muscle spasms and that’s because it’s a muscle relaxant. Now, our muscles don’t need another reason to relax, our MS is already allowing our brains to think our muscles are already weak! I had been prescribed Baclofen but my physio saw it and said I didn’t want that. He was working on getting my hamstrings working again for me and saw Baclofen as being very counter-productive Each to his or her own. Graham.

Interesting to read Graham.

I’m like Tina, in that I’d be a mess without Baclofen. My spasms pre-baclofen were putting my marriage at risk; we’re so lucky to have a spare room…

Hi, I used to take baclofen…for spasms and stifness…my legs were definitely weakened by it and I believe that it put me in a wheelchair early on in my story.

Having said that, baclofen is a good drug, but doses have to b managed with great caution.

pollx

I find that 2 x 300mg helps with the spasms but not the pain. 3 x 300mg also helps with the pain but has other unwanted side effects, so because of that I am back to 2 x 300mg.
Pain has not come back yet, but I can live with that.

So for me, it does seem to work, but I have to keep the dose low and cannot increase it.
I’m on it becuase I asked for something to help and this was the next one to try.

Paul

[quote=“paulx”]

I find that 2 x 300mg helps with the spasms but not the pain. 3 x 300mg also helps with the pain but has other unwanted side effects, so because of that I am back to 2 x 300mg.
Pain has not come back yet, but I can live with that.

So for me, it does seem to work, but I have to keep the dose low and cannot increase it.
I’m on it becuase I asked for something to help and this was the next one to try.

Paul

[/quote] Makes my 10mg twice a day a definite crutch :-))

Hi paulx. Not sure what drug your thinking about, but can’t be baclofen, not 300mg, think they only do 10mg think you can take 60mg a day max, tell me if I’m wrong?? Sorry late reply, been away 10 days, didn’t take one baclofen while I was away felt terribly, could hardly walk or stand, taking 10mg twice a day again, think a bit better!!!