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Baclofen again

Hello,i have stiff legs that makes it hard to walk fast as i cant bend my legs properly making it difficult to go down small steps and stairs without a struggle.I was on 45mg baclofen but my neuro upped it to 60mg.im on 55mg a day now,have to up it every 2weeks.Thing is im not really feeling any difference yet and im just wondering is it something im eating or what that makes this stiff legs worse.Have high hopes that Baclofen will ease it… Jimmy

Hi Jimmy,

Gosh, your neuro is very cautious, making you wait two weeks to raise by just 5mg!

5mg is a very tiny increase, so if you’re not getting any benefit at 55, I’m not honestly convinced you will at 60.

Though some people have a sort of threshold before it works, so if you have a high threshold of 60, you might be lucky, and the extra 5mg could still make a difference.

I’m on 60, and it’s just about alright, though not as effective as it used to be. There’s very little evidence of a big tolerance problem with Baclofen (in other words, most people don’t have to repeatedly raise the dose to get the same effect), so I think I have to face facts and admit my MS has got subtly worse (not surprising, after five years), and that’s why they’re not quite as successful any more. I usually split the first two tablets, having one in the morning and one early afternoon. Then I take two at about teatime, and another two last thing at night - and a diazepam.

I find the Baclofen are only good for about four hours, so 60 can’t give round-the-clock cover, and I do feel them wearing off. The diazepam lasts slightly longer, at about six hours, so I do have a little extra cover overnight, although it still won’t go right through 'til morning, so I do find myself woken early most mornings with stiff and painful legs - that’s if I don’t need the loo anyway, which has nothing to do with the Baclofen, but is the other regular thing that happens. I can’t seem to last the whole night with that now, either. So whether it’s pain, or loo, or both, I rarely get an unbroken night now.

I’ve only noticed one odd link with eating, and that’s that I always have bad cramps after a meal from the local chip shop - but no idea why.

Otherwise, no, I don’t think your stiff legs are to do with diet - it’s the disease. Are you doing any stretches? Ideally, you should be, and not just relying on the pills, but I’m really naughty at doing my stretches - I really hate and neglect them, and usually turn to them only when desperate - which is normally too late to make much difference.

Tina

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Hi tina,i am feeling a bit better on it so far just not the improvement i had hoped for.My neuro increased it slow because i complained of the side effects lastyear but now i dont even notice them.I sleep good i dont get cramps or spasms at night i just have horrible mornings.I might just try taking them less than 6hours apart now tina,thanks for that.I feel them wearing off at around lunchtime,il take a half then and see.You are doing good on baclofen,it works well.Im 4years with this illness and havent had a good year yetI was just in the middle of my stretches when i got your message!. Thanks tina,i learned a lot from you but im hoping i feel a bit looser when i increase to 60mg next week… Jimmy

Hi again Jimmy,

Well, I wouldn’t say they’re a wonder cure - nothing is. But I do know I’m a lot better on Baclofen than I would be without them. I can certainly feel the difference when they’re wearing off, and especially if I ever forget one. I’ve even mistaken it for a relapse before, before noticing my Baclofen still on the counter, waiting to be taken, and realising that’s why I feel so unusually crap!

I don’t know about good and bad years. In five years, I’ve never felt completely well. Not a day goes by that I don’t have a thousand little reminders that all is not as it should be.

But on the other hand, nothing truly awful has happened either. I haven’t been hospitalised, I haven’t been conspicuously disabled.

So what is good? What is doing well? I’d be fibbing if I said I was fine, but if I’ve still got my independence, and if another year has passed without me ending up in hospital, I count it as a good year.

I know in some ways I have ridiculously low expectations now. I never thought I’d be trying to be thankful that I haven’t died and can still walk, before I’m even 50. Living with pain isn’t good, but it’s do-able.

Tina

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Hi, can I just offer a warning Jimmy, please?

In my own experience I took baclofen for spasms and stiffness and found it helped. But my dose was high…70mg…before it worked but it caused falls, by making my muscles too weak.

I believe it put me in a wheelchair and if I had been able to try FES or something similar, I wouldnt have spent the last 12 years with zero mobility.

I dont mean to put you off baclofen, just to watch the dosage.

Hope you find relief.

pollx

Tina,its true that its not a wonder drug but it does help with my stiffness.I do have good days where i have no stiff muscles and i feel good and happy but that is rare.At the moment i feel crap…Im goin on tysabri soon so that has given me a bit of hope after 4years of ups and downs.Ive been hospitalised which was ok and now i walk with a cane which dented my confidence massively but im not dead or dying which is good and i do get around.Im trying to live with hope and when my neuro increased my baclofen i felt hope that it would change things but nothing yet.I do feel a bit better and i will be up to 60mg next week so il see then how i am.You have great confidence and outlook tina.Well done. Thanks Jimmy

Hi poll,im not too keen on baclofen either due to the muscle weakness you speak of but i need something to relieve the stiffness.Il be happy with 60mg if it works and i dont want to take any higher only if its a pump.My neuro wants me on fampyra but i cannot afford it sadly.I want to stay mobile as long as i can but if not so be it.Thanks for the advice poll, Take care, Jimmy

Hello,

Stiffness. Try clonazepam. Talk to consultant, MS nurse or GP. As far as I understand baclofen stops neuropathic pain such as restless legs.

I started using a FES late last year and was weaned off baclofen and all gabapentin except 300 mg at night. I was told that these drugs reduced my awareness of where my legs were when I was walking. Stopping the pills bit by bit was a bit tedious but no problems now except for the occasional restless legs just before I go to bed.

My legs do twitch at night so I take tizanadine. It has same effect as bacloofen but is effective for much longer.

I know everyone is different, this works for me.

Patrick

Hi patrick.Thats a good point about all these drugs reducing awareness of where my legs are and thats the way i am today.I was told that it was proprioception because my balance has got a bit worse.I hate taking drugs but my neuro told me that all my exercising will not sort my stiffness problems and that i need to take muscle relaxants.Id love to try FES,hear good things about it.I must give it a go. Thanks patrick, Jimmy

Hi Jimmy,

I totally agree with your neuro! Exercise alone may be sufficient if symptoms are mild, but they really don’t cut it with hardcore spasticity!

I was taught calf-stretching exercises years and years before I was ever diagnosed. Looking back, you can’t help wondering whether more could have been done sooner, and whether questions should have been asked about why I had such abnormally tight calves (the only reason it came to light in the first place was because I kept getting achilles tendon injuries).

After I was diagnosed, I waited another several months to see anyone who would prescribe me Baclofen, but realised within a day or two of starting that I should have been on them years earlier.

Because it was quite gradual, even though I have RRMS, not progressive, I hadn’t realised how much pain and stiffness I’d been accepting as normal! It was like a constant noise that you’ve learnt not to notice until it suddenly stops, and then you realise how quiet it is. It was like that when I first took baclofen. It fixed pain I didn’t realise I had.

Pity it’s not that effective anymore, but it’s still a lot better than taking nothing - which was what I’d had to manage with for years.

Tina

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Tina,my neuro was quite straightforward about my exercise and my notion it would stop my spasticity in that it wont stop it.I begged him for baclofen a year after i was diagnosed and he gave it to me and had to increase it every year which im glad of.He said he has 1 patient on 100mg but i dont need that and i dont want that much and that tizanadine might not suit me.I always kept fit but like you i had tight calves and ignored it and assumed it was something else.Im the same wondering that more could have been done sooner.Im RRMS but its highly active at the mo.Im feeling alot better since ive increased my dose,i just wish i had pushed for this level lastyear.We,the patients should be listened to more,its us that has it eh. Thanks tina, Jimmy :wink: