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Baclofen - Are you on it?

Hi all my hubby has been advised to try Baclofen 5mg for his leg spasms. Do you find they work and do they make your legs weaker. thanks all

Hi,

Yes, I find they work (but not at 5mg, which is a very tiny beginner’s dose), and no, I don’t find they make my legs weaker.

Like all drugs, some people will get side effects, but you can never tell unless you try, so don’t be put off by negative experiences, as some people (like me) will have no bother whatsoever.

Although they are not painkillers, I noticed an almost immediate reduction in pain when starting baclofen, and wished I’d been on them ages earlier (years!), but I couldn’t have been, as I wasn’t diagnosed. I hadn’t realised how much pain I’d just been putting up with as “normal for my age”, until I took something that helped! The pain was (is) spasticity related, so relieving the spasticity helped relieve the pain.

I’ve been on a relatively high dose (more than my neuro wants) of 60mg for about three-and-a-half years now, and am finding it’s no longer so effective. BUT, in general, tolerance (needing to keep raising the dose for the same effect) is not a big issue with baclofen. Sadly, I fear the reason it’s no longer working so well for me is that symptoms have worsened, rather than that I’ve developed tolerance to the drug itself.

I still wouldn’t be without it, even though it no longer does the job as well as when I first started. I firmly believe I wouldn’t be able to walk without baclofen, as my legs would be too stiff and tight. I can still walk about 3 to 4 miles on a good day, so no, I don’t think there’s any issue with my legs being weak, do you?

I would suggest hubby gives it a try. There’s no compulsion to stay on it if he doesn’t take to it, but it might make life a whole lot easier. You do have to wean off if you want to stop from the higher doses, but unlikely to be much of an issue with just 5mg.

Tina

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Anitra thanks very much for your reply I will advise hubby to try.

I take 6x 10Mg Baclofen/Day and I don’t find it making any of my muscles weaker. Doesn’t get rid of the spasms 100% (I also take Tizanadine 4x4Mg/day). Both together make the spasms tolerable.

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Sometimes I think unless you take. Then stop. How do you know the difference. Iv experimented over the last year, and found taking them made me feel worse. Just try and see, don’t be frightened to stop again, it’s easier than giving up smoking. Lol

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Hi, I think baclofen is a good drug at reducing spasms…but yes, they can make your legs weaker, but 5mg is a very low dose and it may need to be increased…but steady yeh? x

pollx

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I take 10mg twice a day and have done for 4years, I initially took a higher dose then reduced. In the same 4years I have gone from RR to SP my walking is significantly worse. I really don’t blame the Baclofen I believe it is simply a progression of the disease. I could be wrong but I am not prepared to stop taking Baclofen and risk the spasms I was having 4 years ago returning. I am sure if my MS Nurse or GP thought Baclofen was causing my deterioration they would advise me to stop taking it.

My advice to your husband is to try it and see.

Jan x

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Hi, I’ve been on it just over two months. At first it made me feel unwell and my legs did feel a bit weaker (that’s when I was on 10mg twice a day). I’ve gone back to 10mg once a day when I get up as that’s when I’m stiffest. Since then im feeling much better. On the plus side it greatly helps my stiffness and my bladder is behaving itself ( should I be worrying about retention) On the downside I’ve put on 1/2 stone since taking it (is that a coincidence I ask myself or am I just being a pig?) I didn’t see anything about weight gain in the side effects.

Heather.

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Had to stop baclofen 5mg after two weeks. It certainly stopped leg spasms at night and eased stiffness, however it relaxed all my muscles to the extent that I was so ‘floppy’ I couldn’t stand up!

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I’m on 40mg of Baclofen a day and can honestly say they’ve helped a lot. The spasms haven’t gone completely but the intenseness of them has eased. I combine them with gabapentin too. Tell your hubby to give them a go. Julie x

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My neurologist has suggested I go on this a letter he sent to Ms nurse just waiting for them to contact me, if it eases stiffness I will be taking it.

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Thanks all for your responses. As yet he has still not got the medication so will have to follow that up.

I do remember a few years ago he tried a tablet for his tremors and it was also for epilepsy called Primidone and I noticed his face had dropped Bell’s Palsy so this had to be stopped and the face went back to normal.

Some of these side effects are terrible.