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Baclofen; what dosage are you on?

Hi; I’m on 10mg per day, to be taken just before bed, but it is not stopping my spasticity which is now getting worse and waking me up. I’ve tried taking 20mg but this makes things only ‘sightly’ better, and I’m not sure if it’s safe to be taking this amount in one go. Any advice/thoughts would be much appreciated. Thanks, Pigeon.

Hi,

I take 20mg around 7pm and if things are bad take an extra 10mg at 10ish. I’m sure you can take more at once but I’m not sure what the maximum dose is. I’m sure someone else will be along soon.

Sarah

Hi, I no longer take baclofen on a daily basis as the side effects slowly became worse than the problem …at that time I was taking 80mg a day…I now take 40 mg on the nights that its really unbearable . I do find by doing this it works better for me that when I take it regularly. I queried taking 8 tablets a day with my GP who told me 80mg was nothing to worry about as she had one patient taking 130mg per day, although this is more than recommended by the manufacturers. Hope this helps a little but maybe your MS nurse would be a safer bet than me ! Nina

Hi Pigeon, I take 10mg throughout the day (06:00, 12:00.17:00, and 22:00) I can take 20mg at 22:00 if required, hope this helpsM

Hi

I take 20mg at night and 10mg breakfast and lunch if needed. It says on my prescription up to 20mg 3 times a day, but I have never taken that amount.

Hope this helps.

Pam x

Thanks guys. Good to know others are taking 20mg at night. I tried it last night and it worked, so fingers crossed.

I just picked up my first prescription of this and I start on half a tablet 3 times a day (so that’s 5mg each, 15mg in total). I was reading the leaflet in the car and that’s just for the first week then onto 10mg x 3 times a day… my meds are in the glovebox so I will check this later, I’m sure it said you can take up to 30mg each dose (so that’d be 90mg in a day).

I guess like most meds they can tinker with what you take and when. I phoned my surgery about the recommendation to take it and said I was reticent so could I take a reduced dose? The doctor said start on half a tablet 3 times a day and keep it at that level if it did what it needed to.

So I wouldn’t worry too much Pigeon, I will check the leaflet later for you tho :slight_smile:

Sonia x

Hi Pigeon, I did check my leaflet and it was typically wooly, basically 20mg x 3 times a day is a normal dose (if required) BUT you could be prescribed up to 100mg a day and it is not unusual to be given more at night than during the day. I can’t edit my last post but given max 100mg, I wasn’t far wrong either lol. Gah, no return again… Sonia x

Hi, I`ve been on baclofen for several years.

It is one of those drugs which docs ususally tell people to find their own dosage. But it must be increased slowly.

It is good at helping with spasms and spasticity, but too much can cause falls…at least that`s how it was for me.

I am currently on 30mg at night. The most I ever took was 60mg a day. I do believe it was partly to blame for me needing a wheelchair so soon.

So take your`s with care, yeh?

luv Pollx

Hi I take 10mg 4 times a day plus 4mg of Tizanidine at night. Takes the edge of spasticity only

Moyna xxx

I’m really hoping that I’ll cope on just half a pill 3 times daily as I do find it makes me feel pretty woozy before the shuddering even stops! I’m only taking it because the physio sad I shoud, it did make me wonder tho, does anyone take Sativex? I think that’s what it’s called, the cannabis based one… I’m curious as I have to admit I was quite surprised at how giddy I feel 20 mins after taking half a baclofen - Sonia x

Im with a lot of peoples comments on here: I was prescribed Baclofen from day one of diagnosis due to leg spasums, especially at night. I just took 5mg in liquid form to help me sleep, but found i was like jelly the next day. It seemed to help spasums when needed, but made my mobility worse… so i stopped it. Ok, i still get spasums at night before bed, but ive now controlled mine without Baclofen as a ‘placebo’ … i find leg stretches and a large Jack Daniels before bed helps soooooooooo much better.

Dave, was it your story anout having a fall in your kitchen after taking it? I know I had a pretty dim view of it from something I read… I feel I’m in a bit of a catch 22 situation with it, this morning it was a struggled to get out of the car as my legs felt so stiff so I took it the moment I got to my desk. I will definitely have to ask the doctor some more questions about it!

Sonia x

I was diagnosed Baclofen when I was diagnosed a cople of months ago. I got the prescription but haven’t taken it as the spasms weren’t too bad. Instead like Dave I have been stretching/ yoga poses and it has really helped. Also physio has been really useful, nobody suggested that - I referred myself through the GP. I suppose I wanted to see what ‘normal’ was before medicating it. Maybe my neurologist prescribed it, to show they were doing something, but actually what you need is a proper physical / lifestyle assessment as a starting point.

I think the stretching etc. can really help but it does seem to be so hit and miss that I don’t rely on it now, my legs just can’t be counted on! lol

Having said that, I did stretch last night as I’ve had a few really bad days (been getting a little despondent anout it to be honest!) and one leg hurt so much that I really had to be very careful stretching BUT this morning, well, I’ve barely had to put any weight on my stick! It’s always nice when it works out like that. I’m going to stretch again tonight and see if I can’t do a lttle exercise tomorrow :slight_smile:

Moid, it was my physio that suggested taking baclofen but I was having a really shaky day when I saw her…

having said that, I’ve just reached the 2 weeks mark of reducing LDN dose down to 2.5mg and I wonder if things are settling down with that? When I got to the ‘optimum’ 4.5ml the spasticity suddebly hit me, I went down to 3ml for a week then 2.5ml for the last 2 weeks SO fingers crossed… I will keep monitoring progress as It’d be nice not to have to juggle so much but if all goes to plan I will be sticking to half a bacofen pill rather than taking more!

Sonia x

Hi Sonia. glad to hear the stretching helped. I have been doing hot yoga, getting regular massages from an experienced massage therapist since about July 2011. I was a bit of a mess before then my pelvis was all twisted, my legs were like solid blocks, I fell over quite a lot, my bladder was extremely temperamental, my legs and calf muscles solidified over night, my hips were always sore AND I am so much better now, my nightly spasms have disappeared, I can’t remember the last time I fell over, my walking gait looks normal even if I can’t walk for more than 20/30 minutes, the massage has really helped with the pain. I don’t want to be all preachy and obviously every story is very different but if you have the capacity I strongly recommend yoga and massage. But if you are doing yoga do go and see a teacher, ideally a one to one initially to get you on the right track.

Thanks Moid :slight_smile:

I can’t do the hot stuff as I react badly to heat but I was going to look into pilates so yes, yoga is a good idea too. And massage is something I’m going to look into too, I really feel like I’d benefit from that as I can literally feel the mess my hips are in now!

I did do quite a lot of core strength exercises when I was teaching polefit, so if I’m really hoping I’ll do some exercise over the weekend and if I’m brave enough a little bit of polework.

Sonia x

Good luck Sonia, there are yoga teachers with MS experience. Not sure where you are based, my massage therapist is based in Wokng, Surrey and found another one in London. If you are interested google - massage therapists pain relief / MS. Most therapists will not have the relevant skills. Take the exercise gently, think the aim is to keep active and flexible. Take care.

Thank you Moid :slight_smile:

I did teach pole in Camberley but I actually live in Reading so yes, I’ll have a look on google

Sonia x

Yes Nindancer, it was. My leg just gave way all of a sudden. I only take a tea spoon of it now if i cant sleep at night, i helps with the spasums and enables me to get some sleep. I wont take it in the day as i cant rely on my leg holding out, so i feel safer just tensing up to move rather than Baclofen turning me into a jelly state.