Baclofen for spacticity

At my neuro visit this week I was prescribed Baclofen. I haven’t started taking it yet as on the web it said common side effects are the same as my symptoms, muscle weakness in my legs, light-headedness, stomach cramps and constipation. I am concerned that he has given me something that will make my symptoms worse. Although I get stiff legs and occasional cramps, I can still walk with a stick and currently work full time. However, if my legs get weaker it may prevent me from doing this. The neuro said to try them and if it doesn’t work for me just stop taking them, but it is worth giving it a try. Has anyone else taken these and had side effects? If so, how long did it take for them to wear off, either because of not taking it any more, or because you got used to the medicine?

Saffie

HI Baclofen was given to me and although at first they were effecting me after a couple of days the side effects stopped and now i can take then ok…if you start them and then stop remeber to drop your dose gradually

Hi Saffie, I took baclofen for several years…at first they were amazing. Unfortunately after taking them for quite a few years they weren’t so affective…I think my body just got used to them …consequently I was on a very high dosage, 80mg per day…this was when I started to suffer with side effects and in the end I stopped taking them. But certainly for a few years they were very, very effective. Now instead of taking them daily…I use them when my legs are at their very worst …I find by using them as little as possible …they are so much more effective again when I do use them …hope that makes sense to you. I would certainly recommend taking as low a dose as possible to start with…my original dose was 5 mg…once a day. Everyone is different and our MS is different but if I were in your position I would start them on a day that I wasn’t working…so that you can more easily judge the effect they have on you. Hope this is if some help. Very best wishes, Nina x

You could do worse than to try magnesium first and see if that helps, as it can ease problems with spasm & cramp.

Thanks for your replies. I am quite lucky at the moment as I only get infrequent cramps and some spasms when I get up in the morning which are bearable. The rest of the day I just get occasional cramps and no pain in between, but the neuro said my legs are getting stiffer. My main symptom is weakness/numbness in my legs, so I am not sure if I need to take Baclofen yet. If I do I will definately start it on a day when I am not working. I am thinking of asking to be referred to an MS specialist now that my symptoms are progressing but we do not have any at the hospital where I am currently seen so it will mean travelling further. I will also have a look at magnesium.

Thanks

Saffie

I’m like Nina and Mac51, in that I take Baclofen and they do the job of stopping my legs going bezerk at night. I take 30mg before bed and on the days I forgot to I ended up with no sleep.

What I worry about is becoming dependent on them, as with any other drug. Apparently if I stop taking them then other nasty things will happen, which I find slightly scary. Anyhow, I’d give it a go but small dosage first.

Gave me such bad headaches I had to stop taking it.

Shame as I could do with something.

According to my Neuro it helps spacticity but some of us, myself included, need the spacticity to remain mobile. It depends very much on whether your symptoms are caused by nerve or muscle problems. Much of the time they’re unsure until they start you on the Baclofen. The side effects of the drug are usually reversible though so if it was prescribed for you it might be worth giving it a go. Hope that makes sense…

Cath xx

I once asked, are my symptoms the disease or the medicatilon? The doctor replied ‘good question’ and my MS nurse said ‘stop taking the medication, and see what happens’ I know everyone’s MS is diferent but I went back on the medication!Best of luck we tend to muddle on, regardlessM

I also went without medication for a while (Maybe we should call that going commando?) but just made the elf more difficult to love with. I think it’s good to keep it to a minimum. Some people where I live take about 15 different meds a day… and they have no idea what most of them are for. Has made me realise you have to take charge of meds… know what they are for and how they affect you. Keep on trucking… Nice to see you M, Pat xx :slight_smile:

Weakness is supposed to be a ‘rare’ side effect… I was ok on a really low dose but I did suffer from weakness when I increased (legs almost gave way on me), so I stopped pretty quickly, then the same with tizanidine (could not get up from a low chair on top of a couple of twists to my knee, I’d assumed were my fault).

I’ve learnt that I’m pretty resourceful, hands on the floor are a good way to stand up (if not very dignified with your tush in the air) and to climb the stairs (again, NOT dignified). I thank heavens that I was flexible not that long ago

Cath (Min) is right, everything goes back to normal pretty quickly… when I’d weaned myself off the baclofen I had my early morning shakey stretch in bed that I had completely forgotten about whilst I was on the Baclofen, so it clearly does work!

I’m now on Dantrium and it works differently (apparently) and I’m relieved to say that it doesn’t make me yawn as much!

It does seem that a lot of the meds play up to the kind of symptoms we’re likely to have anyway so like Pat says, it’s wpprth taking some control over what you take

Good luck

Sonia x

Hi Saffie

I find baclofen helps but when I try to increase them, for some unknown reason it makes it worse to start with.

Worth a try, but if it of no help stop, but cut d8wn gradually to wean off.

Welcome to the forum.

Pam x

I’m in a similar position as I’m struggling a lot with spasticity in my arms and weakness in my legs. I had a review on Monday and it’s been suggested I start taking something, which I don’t really want as it’ll effect my whole body, not just the bits that are stiff. I use the spasticity in my legs to walk. Baclofen will make me a full-time wheelchair user. A couple of years ago, it was suggested I have Botox in my arms, but my neuro said no. She said my arms would be too floppy and I’d be unable to bend them. Heather

Whammel - I’m very interested in your comment about magnesium - what’s the best way to take it? Would it be something like a supplement from a health food chain or Boots? How much should I take? Is there an unsafe dose to steer clear of?

Chris

I’ve just started using magnesium oil. You basically spray it on the effected part and massage it in. It gets absorbed through your skin and starts working quite quickly, unlike tablets which have to be digested first. I read somewhere that you have to persevere with the magnesium oil as it can be several weeks before you notice any benefit. Heather

I take 375mg in tablet form from Healthspan and find that does the trick, although you might need to experiment a bit before finding the amount that suits you. It can act as a laxative in high doses, but otherwise it’s a beneficial mineral and much safer than the more serious drugs on offer.

http://www.healthspan.co.uk/

Thanks Heather and Whammel for your magnesium tips :slight_smile:

Chris

Just ordered some magnesium…thanks whammel…fingers crossed! Nina

Hi in my experience, baclofen doses need to be monitored carefully.

I oringinally took it for spasms and spasticity.

We do need some leg stiffness, in order to stand and walk.

I began on a low dose and got up to 75mg, before the problems subsided.

BUT the high doses can cause falls, as it weakens the muscles (I didnt make the connection for a good while). I had many falls and needed a wheelchair, much sooner than I reckon I should`ve.

pollx

Thanks for all your comments. I have started to take magnesium tablets and my legs are a little less stiff and I have had less cramp. However, when I went out today I couldn’t walk for as long as I have sometimes done recently. However, I don’t know if this is because I need the stiffness to walk or this may just be part of the progression. I have decided that I am going to see my GP and discuss the Baclofen before I take it (and managed to get an appointment in only 11 days time!).

I took another look at the baclofen leaflet and it also says you shouldn’t take it with anti-histamine. I am surprised the Neuro didn’t mention this to me as he must have it on file that I take anti-histamine for allergies.

I’ll let you all know how the magnesium goes.

Best

Saffie