Forum

Baclofen

Hi, hope everyone is well. I’ve just been prescribed Baclofen and wondered about the side effects? If anyone is taking it I would appreciate knowing how you are getting on with it. Heather.

Hello Crackers,

I take 2 a day, one in the morning and one at night. Tried 3 or 4 a day but makees my joints a bit rubbery, sort of loose control of them. No other side effects

Patrick

Thanks for the reply. I’ve just been reading the side effects and don’t like the sound of them. I think I’d better start taking them next week when I’m off work just in case. Heather

I’ve been taking Baclofen for four years. 10Mg twice a day. I also take 80mg of Propranolol. I get very tired and I can’t drive long distance anymore. I blame the medication but I put up with it because of the benefit I get taking the meds. Jan x

I am on baclofen 3 x 20mg and I find it no problem It is a blessing in the morning when I get up and I find rigour mortous has set in. But seriously I was tired the first few weeks and now I don’t

They started me on baclofen, if I had known how week it would have made my muscles feel I would never have started, took for over a year, was struggling to walk round a golf course when I was put on it, within 6months couldn’t walk one hole, stopped about 6 weeks ago, when ms nurse agreed they can do that?? Feeling tiny bit stronger No worse, started cutting down on lots of drugs, fed up being guineapig with no benefits. People say yes they help, but unless you stop, how do you know if they really did.

Why did you start taking Baclofen Graham ? I started taking it to stop muscle Spasms, I reduced the dosage after about six months but I’m too scared of the Spasms starting again to stop completely. I’m not a big fan of lots of medication so I understand your stance. I often wonder about DMDs how do people know they wouldn’t have been in remission without taking them. Obviously they do work but for how many. Good luck with your reduction of drugs. Jan

Hi jan. started taking because when I started having balance/walking probs, bearing in mind I was teaching salsa dancing at the time so it stopped that, when the nuro said I want you to take this, because I said my legs feel stiff probably, they can’t feel what you mean, and I wonder if sometimes we discribe our symptoms wrong, so I just wanted something to make me right again, like getting over flu, what do we know at first, it’s not for a couple of years, till you start to realise its not just going away, iv been on rebif since jan, but unless I go back to jan, and start again without it how do I know, since it all kicked in about 2yrs ago, there has been no remitting just steadily down hill, it’s only the last 6weeks it seems to have evened out, prob wish I never said that, lol. Ps when I first stopped taking it every twinge I thought, I need one, it was like giving up smoking. Lol

It is so difficult to know what to do for the best. I was never offered DMDs as I didn’t class the episodes of numbness, tingling, pins and needles, etc as relapses. If I’m honest I didn’t know enough and I’m not the kind of person to ask I just “get on with it” obviously they weren’t debilitating enough to prevent me “getting on with it”. So I didn’t have to choose or opt out of taking DMDs and in a strange way for that I’m grateful. We do what we think is best at the time and as you say unless we describe things exactly how do they really know what we are experiencing especially as we all experience things in similar yet different ways! Well done you for doing something positive and if it all goes pear shaped you can always go back to the cocktail of meds. My MS Nurse has sent a list of drugs to my GP for him to prescribe if I decide I want to use them, so far I’m resisting and just trying to deal with my symptoms. Having said all that I’m still not giving up my Baclofen !! hahahaha Jan x

Jan. if it works stick with it. My legs feel so stiff right now I’m thinking should I try one and see what it does, lol. This is what the brain does to ya, can now imagin how it is for an addict needing the Nxt fix, sometimes I think back 2yrs when first had problems, and thought they were bad, and think, can I be like that again, wasn’t as bad as I thought, so how can I expect anyone else to understand, then there are people reading this thinking, I would like to be how you are now, so I feel bad for them, some one wrote the other day I can run 2/5miles but can’t walk far or get up stairs, I thought you lucky Ba!!!d. Lol

Crackers, I’d say try Baclofen and see if it helps you, we are all different and we all react differently to medication. Hope it works for you. Can I ask why you are being prescribed it? Graham I read the post about being able to run but not walk…I wondered, do receive different messages from our brain when we walk as opposed to when we run, could that be a reason why the message to run got through and the message to walk doesn’t? If that makes sense. Just call me Neuro Jan! Neuro Jan x

Hi Heather,

I was on Baclofen 3x per day, for about 4 years, due to muscle stiffness. Found my muscles got weaker so put on amiltriptyline - that made me tired so now take a mixture of both … MS nurse said just trial and error will get the right balance. Otherwise it didn’t make me tired but did make my mouth dry - drink water or buy dry mouth spray from ‘shoes’ the chemist!

Only thing is you must build it up gradually and never stop it suddenly as it causes problems. I bought a tablet splitter from the chemist to get 1/2 tablets.

Patient.co.uk is quite good for explaining medicines and their effect.

Good luck.

Jen x

Hi Nero jan, it wasnt me that could run but not. Walk, that was something I read & commented on, or mabe that is what you ment? Sometimes txt don’t read the way we are thinking as we txt, if you know what I mean, I have just taken 2 10mg baclofen tablets, just to see if it gives any relif, haven’t taken any for about 2 weeks, but my legs feel like wooden stilts today, so thought mabe not all the time? My body may have got to used to them. Obviously I know drugs can work, Viagra always works, but don’t take every day, been married 32yrs so actually not even every week. Lol not wishing to be rude, but it’s difficult to believe that I need a tablet to actually make something go stiff, by right the man with ms, stiffness and constant spasms should be the perfect lover. Lol. (Not trying to be smutty) just an observation, it’s amazing what boredom does to you, Arrrrrrrrrrr

Hi, thanks for all the replies. Neuro Jan I’ve been prescribed it for stiffness. This is the first drug I’ve been prescribed for MS and I’ve only had Campath before. This heat seems to have made it worse, is that normal ?

Crackers others are more knowledgeable that me regarding medication, I googled Campath and I think that is to treat your MS whereas the Baclofen it’s to treat a symptom, in your case stiffness. Heat can have an effect, lots of people report worsening symptoms in the hot weather. It certainly makes me feel worse especially direct heat, if I go abroad on holiday I make sure I have good access to the pool preferably a pool that has somewhere to sit so I can keep relatively cool. I recently bought a tower fan for home which is helping in the hot weather we’ve been having. Good luck with the Baclofen. Jan x

Hi Crackers, I’ve been on baclofen for about 4 years, now on 3 x 20mg a day. No noticeable side effects and I’d have very stiff legs without. My attitude when first prescribed was I had nothing to lose. Felt a bit spaced out at first but fine in a week. Good luck

Hi all, got a fortnight off and if it stays like this I’ll be spending it indoors in front of the fan. Day two of the Baclofen, only on 5mg twice a day for the first week, then 10mg twice a day for a week followed by 10mg three times a day for a week… My neuro doesn’t want me to get too loose!!!. Jan, if anybody is offered Campath I would say go for it. This stiffness is the only problem I’ve had since my last dose in 2010. Heather xx

Hope it works well for you Heather, let us know how you get on. Jan