Hi my husband has MS - diagnosed nearly 40 years ago
He’s been on baclofen for about a year (50mg a day), but has used physio for about 10 years before that
He’s lost a lot of weight since being on the baclofen.
Any one had similar experience with baclofen
MS carer
Hi there,
I’m on 60mg a day (which is more than my neuro would like me to take), but haven’t noticed this side-effect, or indeed any side-effect.
I think the most commonly reported side-effects are weakness and increased fatigue - neither of which I’ve had. I don’t think I’ve ever heard of weight-loss as a side-effect before, although I’m not saying it couldn’t be, as some reactions are quite rare.
I think I’d be inclined to look elsewhere, though, before assuming it’s the baclofen. Has the unexplained weight-loss been mentioned to his GP?
Are there any other symptoms linked to it? For example, if hubby’s feeling sick, it’s understandable he wouldn’t eat as much. Or is his appetite as good as it’s ever been?
I don’t mean to worry you, but I would get it checked, just in case it’s nothing to do with the baclofen - or with MS either, for that matter. Weight loss can be caused by all kinds of things. Sometimes MS, or the drugs we take for it, get the blame for everything, but it’s not always the case.
Tina
Thanks
It’s the exercise combined with the balcofen. Our reasoning is that the rigidity of the muscles was a barrier that the baclofen removed so that the exercise regime began to ‘burn’ more fat and calories that it wasn’t doing before.
He has up to 1 hour of physical activity 4 days a week - including cycling on a special cycle for his legs, hand cycling, work with light weigths and weighted balls.
Lesley
Hiya,
I have to agree with Tina that any unexplained weight loss should be investigated.
Take care
Pip
Hi again Lesley,
So if the Baclofen has helped, and your husband has been noticeably more active, is there still a cause for concern?
You’re right that it’s normal to lose weight if we’re burning more calories, so if the Baclofen has made this possible, isn’t it a positive thing? Or is you husband now worryingly underweight?
I certainly share his experience of Baclofen helping me to stay active. My neuro wants me to cut down, but every time I try, my walking gets more difficult, and the net result is I spend more time sitting on my bum, which can’t be great!
I suppose I have lost weight (my suit trousers were too big the other day), but have never considered it as a Baclofen side-effect, because I was consciously trying to. I do feel the Baclofen has supported me to lose weight, because it helps maintain my activity levels, but I don’t feel it directly caused the weight loss in itself, if you see what I mean. It certainly hasn’t suppressed my appetite, or anything like that. I’ve just eaten a whole packet of chocolate biscuits! Sshhh…please don’t tell anyone.
Tina
Thanks for your input.
When hubby was diagnosed he changed his diet. Low fat - white meat or fish, and no or low sugar drinks.
His legs remain very strong although he has very little sensation below the waist and any movement of the legs is generated by the shoulder muscles. His legs are still strong enough to support him standing but the spasms used to be quite violent making any standing quite risky. They were also very active at night so we had to pad out the bed frame to stop him getting hurt. It was also quite dangerous for anyone who needed to get close to his legs ie when getting him dressed or undressed.
The baclofen changed all that which is why we possibly missed what was happening above the waist. We were so impressed with the positive changes going on with his legs. There’s signifcantly less risk of him crumbling in a heap when he stands up and I’m no longer likely to get kneed in the face or chest when I’m getting him dressed or undressed!!!
Weight wise he lost 10kg in a year - 69 kg in May 2011 to 59 kg in May 2012 (he’s 5ft 4in), but initially we weren’t too concerned because his upper body was still quite strong and he was achieving more and more in his workouts. Then he started losing muscle mass, which is why we’re now trying to get a new assessment with his neurologist.
In the short term we’ve modified his diet - cut out the low/no sugar drinks - and reduced some of his work outs to just half hour sessions. It’s beginning to make a difference and he’s beginning to gain weight again. He’s also being weighed more frequently
Thanks again