Has anyone been put on this now or in the past? I was put on 10mg x 2 back in mid november, and I’m convinced that it is doing more harm then good. It sort of worked at first, but when I’m on a bad day (like today, quite typical seeing as we keep chickens, it’s VERY windy here and our fence has just blown down) I can barely walk. Frustration is hitting top gear. How long should I give them before talking to my doc about weaning myself off them? Any help would be greatly appreciated.
Thanks 
Hi Dave, I used to take baclofen…when I first started them I thought they were a miracle…but they soon stopped working …little by little I was put up to 80mg a day. It wasn’t until I ran out …by mistake …that I soon began to realise that not only were they no longer helping me but actually the side effects had become worse than the problem. I think like most drugs for MS some of them help some of us and some of them can actually make matters worse. I think our bodies and brains are so much more sensitive than ’ normal’ folks. Hope that’s of some help, Nina x
I was fine on my lowest dose but it wasn’t enough, spoke to MS nurse, she spoke to neuro and doseage changed/increased…
6 days on my legs had given way twice, so I commencd withgrawal! My neuro kindly called me and I explained what was going on and asked about Sativex (told slim to no chance given not NICE approved) so started to Tizanidine and it all went downhill after 3/4 weeks. I ignored the first couple of knee twists (they hurt but I put down to bad angle) and then when I found I couldn’t get up off a low seat (without putting my hands on the floor/holding a table) so it seems I get that rare side effect of muscle weakness!
I am on day 3 of Dantrium (Dantrolene sodium), it works differently (according to my GP) as it works directly on the muscles. Fingers crossed it does seem a bit better as the shaking and stiffness of complete withdrawal have slowed a lot and my muscles feel less tight. I’m still a tad anxious as this drug still required regular liver function tests like the Tizanidine.
I’d love to try Sativex as it seems like it would be far kinder to your body as it’s made from cannabis - typical NICE really as the Sativex mouth spray does not make you high but i BET there’s people out there who’ve never smoked but are willing to try it for their MS symptoms!
Sorry to waffle Dave but I am pretty frustrated, Baclofen seemed like a good idea when I was breaking the pills in half but as soon as I tried to increase it I just couldn’t trust my legs 
My surgery have been pretty good after getting the letter from my Neuro, so I hope you can get some help too
Sonia x
Thanks for the replies I think I’m gonna have a word with my advisor about stopping them, just to see if there has been any lasting damage, I tried using a cane earlier and found that it was ALOT easier, apart from the stigma of maybe having to use one at 24, I think I might be ok with that, so… Silver lining and all that.
I hope you’re all ok and staying strong x
Like the other replies on here, I was initially started on 10mg twice a day but found it made me so sleepy - so I cut back to 5mg at night only…stopped the night cramps and I got a decent sleep. But, I have found too that my mobility is worse - progression or meds? It’s Catch 22 isn’t it?
Hope you all have a safe and peaceful Christmas.x
I was fine at first bt aafter a 18 month period increased to silly mg a day and then weened off tried again this year after five year lapse and was bad on them caused bowel problems and am now on tizanidine but in wheelchair now and cant walk but they enable my legs to move enough to make transfering ok
I’ve never tried them as my Neuro believes I have severe nerve damage and he doesn’t want them as they weaken the muscles to help stop cramps and spasms. He said that my muscles although they do give problems are making up for nerve damage and they’re keeping me mobile. Don’t know if you understood that, but could it be possible that like me, your muscles are doing all the work, and the Baclofen is relaxing them, therefore your mobility and strength are being depleted?
Just a thought, that’s how my Neuro explained it to me when I mentioned the spasms. I know I’m happier to live with them if it keeps me on my feet, even if my legs are weak, I have an unusual gait and permanently need a stick or crutches. Take care everyone.
Cath xx
Ps please don’t try to stop them on my account, see your doctor first, I don’t need you hating me if you get problems, it’s just something to consider and might explain why it doesn’t agree with everyone. My Neuro is the top ms chap for the whole county so he should know what he’s talking about.
Cath, that makes a lot of sense. On the leaflet for the Dantrium it says something along the lines of not to be taken, if you need spasticity to stand/function.
I’m gonna give it some time and see how it goes
Sonia x
Hi guys, well today has been a bust, I could barely bend my legs to walk today, they do feel like they’re easing up a bit now, but it’s not enough, the dropfoot was terrible too. Gonna speak to my MS advisor in new year, I’m trying to not be down about it, but it’s a bit crap to happen right by christmas.
Nevermind though, it is nearly here and I’m still feeling festive and chirpy, I hope you’re all ok today!
do you have any form of urine infection?? I cannot move if I have one!!! Just a currved ball into the mix
I’m not sure. Lately it’s been a little more difficult to urinate but I think it’s cos I’m not drinking enough water. Can that affect walking? Crazy!
Dave a urine infection can affect your entire body. Firstly you do need to drink a lot as the fluid will dilute your urine. Another thing that really affects my waterworks is caffeine. I suffer with retention and need to catheterise very easily but staying away from it helps. If you feel like you have an infection, for example difficulty, urine burning, abdominal pain or fever, you need to see the after hours doctor as they can be really nasty for us. What a Christmas this is turning out to be for you! Hope you have a good sleep and back to normal tomorrow.
Take care and I hope you all have a lovely Christmas
Cath xx
Hi Dave,
Baclofen is the cheapest and the crudest of the anti-spasticity drugs, and it’s often the first thing the doctors try on someone, because of course if it goes well it’s the cheapest solution, which is fair enough. But it affects people in many different ways - it really works well for some - and is a failure, or horrible, or both, for others.
I took the smallest possible dose, 10mg, and it turned me into a 97 year-old zombie (I was 51 at the time!) who couldn’t work out which tube station to get off at, could hardly hold a conversation, and it halved my walking speed. So it was a complete failure. If you come off it, you must do it gradually to avoid unpleasant side-effects.
Don’t worry, there are other drugs available, drugs which don’t ‘clobber’ you like Baclofen does, and it’s highly unlikely that it has done any lasting damage: it has merely sedated you for a while.
Good luck and keep issuing bulletins to let us know how you’re getting on with this.
Best wishes,
Chris
Thanks Chris, I’m gonna be sure to have a word with my advisor about them in new year, since being on it I’ve been having some really odd dreams too, some which would seem like a beautiful LSD trip (I would imagine) And some very dark nightmares, last night resulted in alot of broken sleep because of that. Bringing me down load today >=[
What drugs are you on out of curiousity?
Thanks
Dave, really sorry to hear it’s bringing you down. I think you must be one of those people who it affects powerfully and not at all pleasantly. But don’t worry - there are other options.
I don’t take any pills, but I have Botox injections in my right leg, the Botox slightly paralyses the muscles, which means that they release some of their stiffness, so my gait is loosened up. This has a positive knock-on effect on fatigue, because a looser gait is less exhausting. Fighting muscle-stiffness is hard work and can leave you very tired.
Another benefit: my right leg looks ten years younger!
(OK yes I was lying about the looking younger bit.)
I sometimes fret about the fact that Botox is used in spy films as a poison to kill off enemies, but the doctors assure me that when it’s injected directly into the muscle it’s completely harmless. I persuade myself to trust them, and I’m still alive.
Take care,
Chris
Hello
I feel alot better now, was a bit of a temporary morning lapse I think. I definitely want to stop the Baclofen, it isn’t working and that’s end of story really. So will get that sorted. I’ve NEVER heard of botox for it though, is that private? Sounds expensive, if only for the youth of your leg effect 
Dave
Hi
I use baclofen and have always stated the stuff doesn’t work , my issue is the left foot tightens the ankle and runs straight up the calf , thigh and straight across the groin area which can lead to some embarasing moments.
The botox does work and is on NHS i had it first time in my calf in november and seems to have released off just leaving the ankle and groin areas , speak to your specialist or in my case physio .
Duane
My husband has severe leg spasms. He has primary progressive for 20years and is wheelchair-bound. Recently his legs have seized up, he can’t straighten them at all. He tried oral Baclofen which just sedated him. He has been referred for a Baclofen pump - inserted into the abdomen with a tube into the spinal cord to administer the drug directly to his legs. We are hoping it will do the trick, apparently it means you need lower doses. Anything to release his legs - life is very difficult at present, washing and dressing and toileting awkward.