Baclofen - any comments/experience, anyone?

Thank you, VS, that's exactly what I was worrying about. I particularly despaired when the lovely GP celebrated that mother's eGFR hasn't got worse - I couldn't quite believe it and didn't challenge her, but I'm horribly afraid that she was worried about the Baclofen exacerbating renal failure, rather than the renal failure exacerbating the potential toxic effects of the Baclofen… - but no matter! I have my moratorium, the Baclofen is suspended pending continued improvement in her arm - we'll give it a week or two and if it gets no worse and her mood improves… well, fingers crossed.

I'm also hoping that these new bouts of breathlessness are muscle weakness, listed among the common side effects, and not a silent cardiac event which to be honest she could have at any time. Oh boy. There's no new oedema and she's been off diuretics for a month, now, but you can't help worrying.


Hopeful about seeing the neuro./geriatrician on Thursday, too, thanks to his lovely helpful secretary; bit more begging to do on Monday and with any luck he'll squeeze us in. Thanks again, I'll read the article with interest and pass it on for future reference.

Countrymouse, specifically for your mom, with severe renal failure, even at that low dose (I'm assuming 1mg/ml but it can be made up several different ways, commonly anywhere from 0.5 mg/ml to 2 mg/ml or even more) that baclofen is quite possibly accumulating and causing serous overdose-like symptoms. here is an article to give to the doctor: www.ncbi.nlm.nih.gov/pubmed/1576939. This and mnost other references indicate hemodialysis will reduce the level, fortunately. I hope that's helpful! We do not see a lot of kids with renal failure, so I have to look up anything I want to use when we do, but fortunately that is not difficult as long as you remember to actually do it!

That's terrific info, VS, thank you - so her GP could be crossing her fingers that the side effects will sort themselves out and the benefit she's getting will build up, perhaps? (pretty borderline benefit if you ask me, but the GP's asking the patient and the patient is an idiot. Literally.)

Swallowing problems, oy. But it's actually her breathing that I'm getting seriously worried about, along with at least half of the "common" side effects - sweating, muscle weakness (like she needs more of that), and a steep decline in her mood - right back to flat affect now. Getting a response out of her is like pulling teeth.

Enough whining! The district nurse took bloods this morning so I'll call the GP tomorrow and hope she'll agree to a moratorium. And if I can swing it maybe even agree to badgering the geratrician (who's also a neurologist) into reviewing her next week when she goes for her pacemaker check.

I don't know why they give us patient information leaflets if they wish we wouldn't read them.

We use a lot of baclofen but really only for spasticity due to pyramidal brain and spinal cord related motor problems. Some people it can make swallowing worse, tendency to have seizures worse if they already have an underlying risk or are not well controlled, and it may aggravate constipation. A few people find it makes them sleepy, most quickly get used to it; a very few people get confused or have hallucinations. OVERALL - about half the people we try it for with brain-related spasticity find it worth taking long term, and probably about 80% of those who use it for spinal cord disorders. Baclofen does have to be adjusted for kidney problems but does not cause them. Many sources say just DON'T try to use it with renal failure. Rarely people can get a little increase in liver function tests but I've never had anyone get liver injury on it. And, importantly, it is really, really different than Flexeril. I have seen it used for acute muscle spasm like a back injury or fibromyalgia and I think it does squat for that sort of thing. It acts on spinal cord gaba receptors. Also, what I mean by pyramidal is spasticity rather than dystonia. Often these things are mixed, but dystonia or extrapyramidal motor problems respond better to a totally different group of drugs. Seriously - if the left arm is the most bothersome thing, see if she could get Botox injection - that's great stuff when just a few muscles are overactive and works for spasticity or dystonia about the same.

I know that's a lot of somewhat techical and experience based stuff to say on here, but the bottom line is that is a drug that is supposed to make you feel or function better makes you worse, don't keep taking it if you don;t have to. Something that works great for lots of folks is the first thing the doc wants to try BUT it may just not agree with you, and more often than not, these things are not predictable in advance. So if you have and confirm a nasty side effect (usually worth trying twice to make sure if it is not too dangerous and might be something else, that's my personal policy for MY adverse reactions) make a note of it, because chances are good the next doc will want to try the same thing again if they don't know its been done already.

This is a muscle relaxant, and sometimes when I take Flexeril (also a muscle relaxant), I will be more groggy the next morning with some aches and pains. It is also 5 mg. I also would not be giving a patient with renal failure a muscle relaxant. Either tell the doctor you are concerned and want to stop it, or get a second opinion. She has so many challenges being on this med should not make a difference.

I think you should speak to mums doctor. You know your mum and her reaction to drugs better than the dr. Although 5mg baclofen daily is a very low dose it is obviously not suiting your mum in both its side effects and spasm/pain control. If the dystonia is still causing problems i would ask to try another drug. Although gabapentin/pregabalin/risperidone all may help with dystonia and may suit your mum, because of her age i would ask to try diazepam (although addictive, a low dose could be taken when required)
Good luck!

My husband was put on Baclofen for muscle cramps in right upper thigh and ended up in the emergency room! He became lethargic, slurring his words, his coordination was totally off. One morning I came into the kitchen and saw him trying to use our Keurig coffee machine and he was so confused, he could not figure where to put the coffee pod or how to push start button. When I went out to the patio where he has his first cup of coffee, he had dropped and busted the cup all over the floor....he is on Cumadin (blood thinner) and was barefooted, thank God he didn't step on the cut glass, he would have bleed to death!

But I would not drive after taking Baclofen.

Baclofen is a muscle relaxant. I take it but I'm 66. It relaxed my legs enough to straighten out at bedtime. Go to Google and look up side effects. All meds have side effects. I have had to stop taking gabapentin bc it started to make my lips swell. But Lyrica which works better causes weight gain. LYRICA and Gabapentin are for peripheral neurapathy.