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experiences of using Baclofen

Hi My MS nurse has suggested starting with 5mg of baclofen to overcome my recent flare up i.e leg spasms, lack of sleep at night, stiffness, tingling and sensitivity in my left leg etc. I can’t have steriods as i last had oral steroids in April. Can someone shed some light on their experiences of baclofen? I have heard of it but thats it. I have been told it can cause drowsiness and its a muscle relaxant. I currently take Betaferon for RRMS every other day Thanks H xx

I’ve been on baclofen for spasms since about June 2010. It’s been great. It doesn’t make me drowsy, but I’ve heard on here that it does that to some people. It works by relaxing the muscles so they don’t get contracted so easily - that reduces spasticity, spasms, muscle jerks,… The major issue with baclofen is that if you take too much your muscles can get too weak and it can add to the risk of falls. This doesn’t tend to happen on lower doses though. 5mg is a very very low dose. In fact, I doubt very much that it’ll make much of a difference! Perhaps your nurse meant you to start on that and build up until you get to the right dose for you? It also won’t do anything at all for your tingling and sensitivity. For that you need something like pregabalin, gabapentin or amitriptyline. Taking amitriptyline at night would also get you a better night’s sleep - it does tend to make people very drowsy! Perhaps you need to talk to the nurse again?? Karen x

Hi H give them a try l have been taking them for about a year. l started on half a tablet at night for two weeks. Then a full 10mg, l feel fine on them and my leg has stoped jumping about at night l get a little dry mouth now and again but that may be the Amitriptyline that l take. l wish you well Regards Jan xx

Hi, I`ve been on baclofen about 10 years. i do think it is a good drug BUT it can take some juggling before you find the right dose for you. As it is a muscle relaxant, too much of it can cause problems. I began on about 20mg a day and went up to 70mg before it zapped my painful spasms. i was having more falls and it took a while to realize this dose was causing the falls. I now take 30mg a day and it seems okay. luv Pollx

I take 80Mg of baclofen a day for spasticity no drowsiness no side effects works a treat :slight_smile:

Hi, I started taking Baclofen just over a week ago for painful night spasms. I have to admit I was very reluctant to try it because of the ‘jelly leg’ stories I have read about so often, and put off trying it for over 2 years. However, I began on 5mg - with the aim of slowly increasing this to 10mg… (I take the liquid form and can measure out small increments). Baclofen has really helped stop the night muscle spasms, stiffness and some of the pain. Definitely worth a try, I wish I had tried it earlier. No side effects either… Good luck, Jo.

hi,I was on 10mg baclofen for about 4 years. It didn’t make me drowsy at all. It does however make you weaker due to the muscle relaxant. Now I am not taking it regularly, just taking it when my spasms are starting, which luckily isn’t too often now. I was on Rebif, and the injections caused spasms very often, Now I’m not on Rebif my spasms have almost gone. good luck Lynne x

All good - dry mouth = carry a bottle of water around. Top tip - buy a tablet splitter from your local chemist , the tablets are so tiny they are difficut to half. Don’t stop taking them suddenly - give you night terrors and other mind bending things. Good luck, Jen x

Thank you all for your experiences. I was thinking to start with half of a 5mg tablet but will start with a 5mg tablet. I was supposed to get my prescription this morning but GP messed up. They can’t find the prescription the hospital faxed over yesterday :roll: they might need the hospital to fa it over again-- but MS nurse isn’t back till Friday now. I will go and see my GP in the morning and get him to sort out what happened and will get him to write a new prescription. But i have had another day of stiffness and walking problems so really want to start taking the baclofen. Also noticed weakness in my right hand- its sluggish and I am slower at typing on here and I can’t write very well- hopefully baclofen will help with that. My MS nurse wants me to try 5mg for a week then inform her how its going then she will let me know if the dose needs increasing- have heard its a case of trial and error. She wants to see if the baclofen works and then can see if once that helps maybe it will rectify other problems i.e my sensitivity issues or they can look at other meds for that after I have used baclofen. Here’s hoping I actually get to take it tomorrow! do you usually take it once a day or how many times a day?

hi i to use this drug for spasms started 5mg x3 times daily liquid form and now on 10mg x 3 daily do think it helps x

I take 20mg 4 times a day…

I’ve been following this thread with interest because following on from my own thread ‘No more MS Support’ today is the day I get to see my MS Nurse after being dismissed out of hand by him a few weeks ago. I can go there armed with the knowledge that people are getting good results without too many side effects from Baclofen - and I was particularly interested to read about it being available in liquid form in order to titrate the dosage. Many thanks all Eiona x

Hoorah! Finally been able to log into this site and post a reply - kept getting told I needed to regester, even though I had. Bit of a loop happening there. Anyway, my physio has recently recommended that I have Botox in my arm to relax my arm muscles. She said Baclofen would work, but that it would effect my whole body and that it’s the spasticity in my legs that’s keeping me walking. Heather

Finally I found where recent replies are! lol Hcd- Thats interesting about Botox Eiona- hope u had some joy with your MS nurse I started 5mg on Thursday and today started taking 5mg at lunch and will take 5mg before bed.I will be taking it twice a day- MS Nurse said I need to give it a week and to call her on Weds to let her know how I am getting on. I had been taking 5mg once a day before bed. It is helping night spasms/ restless legs. I am sleeping better. I do get drowsy sometimes and feel a bit spaced out. It does make my legs feel like jelly sometimes. I need to give baclofen a chance to see if it helps me as i wanted to start pregablin as well to sort out my numbness/ sensitivity/burning issues. MS nurse doesn’t want me mixing too many medicines.

Hi

Im looking for some advise! I was diagnosed with RR MS 15 months ago and have just been put on Rebif injections 3 times a week I’ve been on it now for 12 weeks and for the last couple of weeks I’ve been having terrible leg cramps through the night so the doctor put me on baclofen to take at night before I got to bed. Which has helped but now the cramps and spasms have started through the day. Could this be the rebif doing this as I’ve only been suffering with the cramps since I have been taking the rebif. Any advise and help would be much appreciated

Hi Nikki,

You do know you’ve responded to an old discussion from 2011? All credit for searching to see if it might already have been covered, but in this case, it probably would have been better to start a new topic from scratch. You just hit the “new thread” rectangle (blue on my screen - can’t be sure it is on yours) towards the top left, just under the search box.

Anyway, now you’re here, I’m not on DMDs, but have never heard of cramp as a side-effect of Rebif, so I do think it’s more likely to be the MS - of which it’s a common symptom.

If the Baclofen has been working well for you, with no ill effects, the doctor probably won’t need much persuading to allow you to take it daytime as well - that seems the most obvious tactic. I take three lots a day (actually four, as I separate the first two tablets of the day). If I’m honest, I find I only get 4-5 hours out of them, before I can feel them beginning to wear off (i.e. the cramps start), so I definitely wouldn’t be OK only taking them at night.

Tina

x

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Haha oh god you can tell it’s my first time in here!

Thank you for replying as its a new symptom I was unsure of wether it was to do with rebif or my Ms so thank you for your advice. It will be a trip to the docs then to see about taking it through the daytime to help. From your experience are the spasms/cramps a symptom that will always be there now or will it be like some other symptoms and come and go?..probably an impossible question to answer I know!

Nikki

x

Hi there,

For me, the tendency to cramps is always there now, and looking back, I realise they were on the increase even before MS was ever suspected.

I don’t mean I have cramps continually, of course - that would be unbearable. But even with the Baclofen and a couple of other meds thrown in, I am always prone to them, and get more than the average person (someone without MS) does.

For me, it’s part of life now, but medication manages rather than eliminates them. I still get the odd incapacitating attack, even with the meds, but thankfully, those really bad ones are rare. Mostly it’s just twinges, particularly when my medication is wearing off, and it’s nearly time for the next lot. I can always tell when a dose is due - or if I’ve accidentally skipped one.

You’re right I cannot say for sure how it will be for you; I can only tell you how it’s been for me, which is that it’s an ongoing issue, and occasionally distressing, but with appropriate drugs, mostly annoying but bearable.

Tina

x

Defiantly helps with spasms especially ones during the night .

hi h

i have been on them for about 6 months, and currently take up to 40mg per day. they have worked really well for episodes of spacticity that i have experienced at night which caused massive irritation and pain that would wake me up. its great, as even if it causes drowsiness thats a positive for me as i take it at night. i am off to london soon to meet up with my best mate and watch the recording of a show, a few drinks and a meal, and will take a baclofen with me in case i get spasticity which causes discomfort.

if i take it, i will let you know how it went.

hope things are good with you now, cheers fluffyollie xx