Oral Baclofen Patient Views

I’ve been on oral baclofen since I was 6 and do feel like it has helped. If you have never been on a muscle relaxer, it is worth trying on a day where you don’t have to be as active just to see how it makes you feel. I’ve never had BP issues with Baclofen, but it can make you sleepy. The negative for me is that the longer you are on it, the more you need. Also my body has become dependent on it and without it I have symptoms of withdrawal. If you go off it must be slowly. Symptoms are similar to the baclofen pump. Itchy, twitchy, bitchy is what they say to look for. I also had trouble sleeping, with my appetite, and was clammy.

My child started taking oral baclofen when she was 2 and a half. Though teaching a child that young to swallow a pill was difficult, the amount that it relieved her spasticity was immense. With that said, early on I wish I would have known that it would make her more hyperactive. I was advised it may have the opposite affect and make her more sleepy, but this was definitely not the case. I'm not sure if anyone else has experienced this, but I hope it helps! 💜

We titrated up slowly and stopped when we felt it was effectively helping. I feel it has helped greatly with my son's spasticity. He has not had any noted side effects. He takes it 3 times a day evenly spaced.

Hard to find the balance

My child has been on baclofen for almost a year now, and I have mixed feelings. It has definitely helped with spasticity in his limbs—he is able to reach his arms out and up without getting “stuck” halfway, so we are seeing gains with fine motor skills for the first time! However, his core has become so much floppier. It’s hard to find the balance with this medication.

I took 5mg of bacfloen daily for a week. Immediately I noticed that my hip flexors were looser. I could now go from kneeling to standing without using my hands. Also I could stand on my left leg for 4 seconds and right for 10 seconds. I did a balance assessment with my PT and on baclofen I scored a 53 versus a 48 when not on baclofen. Ultimately this led me to pursue SDR.

Has been helpful in reducing spasticity, but has its limits as higher doses do make my child too drowsy (and main symptom of that is agitation). We’ve kept her on it but not a sole solution. We have had her on a larger dose at night time to help manage spasms at night and found that moderately effective in helping her sleep during periods when the spasms were more extreme. My child is 5 and a half and has spastic quadriplegia.

I take oral baclofen at night and otherwise as needed and it definitely helps for over night for sure. Much less tightness over night which leads to less pain too. I haven’t noticed if it impacts my startle reflex or not. My doctor kind of let me play with the dose to figure out what had an effect but not too much of an effect and it worked out really well. I only take 20mg

It personally didn’t have any side effects for my child. It does not make him sleepy. It just relaxes his tone enough to help with speech, movement and relaxing for sleep. We found breaking the dosage up twice a day helped with consistency in results.

Baclofen has reduced spasticity slightly. We're still working on getting the dose correct. Hopefully it will work a little better once we get the correct dose. We are taking it four times a day at the moment.

My 23-month-old child just started oral baclofen for nighttime spasms, it has been wonderful ❤️ we’re both getting much better sleep