Just lately I’ve been suffering really stiff and painful legs through the night and most nights I wake up at about 3ish with spasms in my legs. I take about 50-70 mg of Baclofen through the day in divided doses and recently have been experimenting with the timings. I think that I wake up because my legs have been in the same position for too long and the Baclofen I take at about 10 pm wears off by the middle of the night. My neurologist has told me that the drug is effective for up to 8 hours but I’m not convinced. When I wake in the night, if I take an extra 10mg I find that eventually I go back to sleep and stay asleep till 8ish. (I also take 30mg of Amitriptyline at night.) What are your experiences of this? And how do you divide the total amount of Baclofen up? Does anyone take Baclofen in smaller doses but more frequently through the day and/or night? (I’ve had RRMS for 16 years, have taken Baclofen for about 8 yrs and have very impaired mobility since a severe relapse last February. This left me only able to walk very short distance with an orthotic devise for foot drop and a walker, the rest of the time I use a wheelchair.)
Hi,
I take 20mg three times daily, which my neuro thinks is too much, as I’m “relatively” unaffected, to look at me.
However, if I don’t maintain these doses, the spasticity is not causing me disability, but pain.
I think “up to 8 hours” is a very generous estimate, the operative words being: “up to” (this is like my “up to 8 Meg broadband”, when the reality is I get 3.5)
I’m increasingly finding the Baclofen wears off after about five hours, and NEVER lasts through the night. I take my final dose as late as possible before going to bed - which for me can be midnight or later - but am still woken up by pain at 5 a.m, or thereabouts, because it has worn off.
I am also finding the 20mg at a time no longer fully address the spasticity-related pain. Whereas I used to be pain-free for at least a couple of hours after taking it, it now only lessens the pain, not stops it. I sometimes have to take diazepam in-between doses, because I can’t take more or bring forward the next dose (that will leave me short later in the day).
I have been very happy with Baclofen. When I first started, I thought it was a wonder-drug, and I’ve never experienced any side-effects. But I’m reluctantly coming to the conclusion it isn’t doing the job any more, and I’m going to have to discuss alternatives. I don’t think I should be having to put up with permanent pain, whether or not it’s causing material disability. And it can’t be good that I never get an undisturbed night’s sleep any more.
Tina
x
Hi Sue and for Tina too,
I used to be on Baclofen and found I was needing to regularly increase my dose as it wasn’t ‘holding’ me for the desired time. I was waking up at night with awful spasms and finding I was getting break through spasms during the day as well. I too started using diazepam as the Baclofen was no longer enough. By this time I was on 90mg in 3 divided doses a day.
My neuro then suggested that it was actually the Baclofen causing the problems and took me off it cold turkey. And from then on I have not had another spasm. In some people Baclofen can cause paradoxical spasticity as a side effect. So if you are finding the spasticity is continually getting worse it may be worth checking this out even though it is unusual.
B
Strange Belinda, Im getting stiffer and having more spasms on Baclofen, I wondered if it was an effect of the meds.
Im not sure if my stiffness is due to age/ms? Cant now get up from bending and cannot cut my toe nails anymore, used to be able because I was born hypermobile. I mourne all the things I can no longer do.
I take Baclofen 3 x 10mg daily and amytryptiline x 15mg per night, if I miss I cannot sleep.
I would try seperating the pills into 6 doses and see what happens, sometimes we have to play around with them in order to get proper relief.
bren
x
Thanks to you all. It’s very interesting that Baclofen can actually cause what it’s supposed to relieve. I thought it was a bad idea to stop taking it suddenly though but if advised by a Dr it should be OK. It’s very useful to know that other regular users also find that it wears off after a few hours. Sometimes I’m unsure what the cause is of symptoms or resumption of symptoms, and I do find that sometimes the Drs tell me something that to my experience doesn’t seem to be quite right! Bren, I too mourn the loss of former abilities and I would dearly love to cut my own toenails. Recently I had a go and it was pitiful, I managed to hack at a few of them but now they are different lengths with a few jagged bits. I’ve been taking one 10mg dose of Baclofen about 6 or 7 times a day for a few days to test it out. I’ll let you know how it works out. Sue
I luckily still swear by baclofen but it only works for 4 hrs for me so my legs tell me when I need my next dose.
My gp is happy for me to take up to 60mg daily however suits me best on a day to day basis as long as there is a 4 hr gap between doses.My scripts also state 10mg to be taken during the night when required.
For me this approach suits me fine.
Take care
Pip