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Baclofen.Dont know what to think

My neuro increased my baclofen up to 45mg 3times a day and i dont feel any different when i was taking 20mg a day.I got more relief from physio and feel a bit worse now than before i started 45mg.Should baclofen work straight away or does it take a while?

Three lots of 45mg a day? So 135 in total (have I done my maths right?) from just 20?

That sounds like an awfully big jump! I take 60mg (3x20) a day, and my old neuro (but not the current one, so much) thought that was a lot!

Generally speaking, when I have increased, the improvement has been quite quick, but not instant. I can have a day or two where I get a so called paradoxical reaction of getting crampier.

Really concerned though, if you have gone straight from 20 per day to 135 in one move. That might be why you don’t feel so good. 20mg per day is a pretty mild dose. 135 isn’t.

Maybe you mean 15mg three times a day, to give a total of 45? I’m hoping so, otherwise I think you need to query the big jump with someone (neuro, GP, or pharmacist).

Tina

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Anitra,my mistake,i meant to say 3x15mg a day.That would have been a lot of baclofen.Id be like jelly.il be 7 days on them monday.I felt better when i was lower dose.I told my neuro that my physio said my hamstrings were v.tight and neuro increased my dose.I regret saying it to him now.Im not getting any relief from them yet.Maybe im just being hasty.Thanks

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Thanks for the clarification - I was worried, and wondered if you could still stand up OK (although it has never affected me that way, but might at 3x45!)

Actually, you are still on more than double your former dose - were you really recommended to do it in one move like that, or a little at a time?

It may or may not be relevant, but I am finding my spasticity is worse than usual, with this cold weather. A few times (including today) I’ve been still cramping after I took my Baclofen I’m not relapsing (that I know of), they’re just a bit harder to tackle than usual, so your experiment may not have come at a very good time, if you are affected by cold as well.

I take diazepam (another muscle relaxant) at night, in addition, and unusually, today, I took one in the day, as I’d already had the Baclofen, but still couldn’t stop the cramps, so I grudgingly put the heating on for an hour, and popped the diazepam.

Fixed it for a while, but I can tell it’s all wearing off now, and I need to top up the Baclofen.

Tina

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Tina,i got it a bit messed up in what i meant to say,apologies.My neuro increased it to 30mg a day back in july and increased it again last week to 45mg a day.It was a shock as i felt good and i actually felt the best in ages.Since i started 45mg a day im feeling worse,thinking its a relapse again but id say its the cold (its v.cold).iv a bit of a headcold aswell so maybe thats it hopefully.You are feeling the same,nothing is helping today.Put the electric blanket on and go to bed,thats what im doing anyway…

I started on 10mg was half a tablet 3 times a day and gp increased to one 3 times a day and after 4 weeks I can have 2 three times a day helps spasms, what effect do you have from it?

I would like something for stiff legs I thought this might ease it but nothing, any ideas?

Thanks x

i take tizanidine for my stiff legs.

carole x

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Hiya

I take Baclofen 40mg per day for spasms and stiffness. I was on 30mg but since upping to the 40mg this has helped with the hug and the heavy legs.

Shazzie xx

Hi shazzie,ive only upped mine to 45mg since monday,i feel a bit better today but thats maybe because im stretching more.Physio is helping me more;cant wait to go back.il stick with baclofen and if my neuro says to try tizanadine i will.I heard its good also.

Hi Alysea,

Do you mean you’re not yet up to the full dose? I’d be very surprised if 3x20mg did nothing at all for stiff legs - it does for me. BUT, if you’re looking for a complete fix, I have to say I don’t think you will find it. Although I find Baclofen helps, it doesn’t solve the problem completely, and the tablets are quite shortlived - I find four or five hours max. So the effect won’t last all night, for example.

It’s a good idea to combine medication with stretches, but I’m the worst person in the world at taking my own advice - I absolutely HATE my stretches, and only ever do them if I’m feeling particularly virtuous and energetic (i.e. almost never!) If, like me, you can still walk, but detest prescribed exercise regimes, you can get at least some of the benefits just by trying to increase the amount you walk, and consciously thinking “heel down first, heel down first” as you do it - this is how you are supposed to walk, but many of us with MS don’t quite do it unless we really think about it, so you have to remind yourself, until it becomes a habit. Then you should get some stretch going in your calves.

Yes, it’s still exercise, but I find it slightly more palatable than standing there doing dull-as-ditchwater calf stretches against the wall, or on the bottom stair. If I’m out doing it naturally, it doesn’t seem like such a chore, somehow. Although I think this present cold weather is very demotivating for anyone who was hoping to get out and about more, and increase their walking range. :frowning:

Tina

x

Hi alysea,stick with the baclofen but up the dosage if you can.Tina is right,do some stretches with it,you will feel the benefit.I exercise now,i find that short intense bursts of exercise help,get the heart pumping.Walking is the best,if you can.Im like a tin man when i walk but it helps.Every little bit helps. J

Thank you all so much xx

i have physio exercises but stiff legs prevent me being able to lift them and I have foot drop too anywhere online I can get more exercises I don’t walk at all stiff legs and poor balance prevent it, my neuro is great but refuses everything I ask for lol no Ms nurse yet I see physio this week I see neuro next month what else could I ask for.

thanks xx

Hi,

Ask physio this week, when you see him, and explain if there’s a problem doing the ones already prescribed - he should be able to recommend things that are within your capabilities.

If you Google “calf stretches”, absolutely loads will come up - most very straightforward and needing little or no equipment (maybe a towel or dressing-gown cord for a few), but if you’re seeing the physio this week anyway, I’d wait for professional advice.

There doesn’t seem much point going down the DIY route at this stage, when you’re seeing him (or her) so soon.

Tina

x

Alysea,i was the same,waited 2years for physio and its the best ever,dont want it to end.She said ive improved since i started it.My neuro increased my baclofen also and its helping.Stiff legs is annoying.I dont walk much either and i hate it.Try knee-pain explained.com and do more stretching and it will help.

Thanks I’ll print some off when new ink arrives my physio wants to discharge me I’ve had 5 or 6 visits only one sheet of exercises though x

One sheet of exercises should be enough - you don’t need hundreds of different exercises - you just need to be doing the right ones!

He should be giving you ones you can do, though. If there’s a reason you can’t, you need to feed that back to him.

Do be aware, though, that some of the exercises will be designed to combat things like foot drop. So if you say you’re unable to do them because of foot drop… Well, you can see where that’s going. The exercises are designed to be a bit challenging, to improve things you’re having a problem with. So if you only do ones there’s no problem with, you won’t actually be improving anything, if you see what I mean.

I know it’s hard - I hate mine too. But I’ve just done some, because I’m about to go FOR A WALK! (fanfare please ) Also loaded up with pills.

Tina

x

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Well done,heading out into the cold for a walk.Was out for a little walk myself with my stick.Im not cold now…

And I’m back! I’ve done it (3.5-mile organised walk). I’m knackered and can’t walk in a straight line - but wasn’t terribly good at that before I started. Bit slippery and scary in places, but not as bad as when I walked part of the same route a couple of weekends ago, and it had ice in it too.

I’m sweating buckets! (Sorry, too much information.)

Tina

x

Haha Tina,i was out washing my car and im knackered too.3.5miles is great,well done.Love to be able to walk that far.Im like a drunk now also,had to sit down a few times,i wouldnt be able for 0.5miles.Well done tina

So ones she gave me are close eyes don’t hold on to anything for 18 sec put one leg forward then next and repeat to sides then backwards and lift knee upto chest x5 stretch out leg hold 5 sec repeat x5 how often do you do them a day?

Maybe I need to increase it?

Baclofen dose I cant up for four weeks, I’ll be upto 60mg next time its increased on 30mg now 3.5 mile wow wish I coukd mind yiu bladder isn’t great so when bladder nurse and neuro sort that maybe I’ll leave house,I want ldn but neuro and gp said no I’ll keep on at neuro lol not giving up.