I was on Tegretolto start with and got so dizzy that i fell 6' on to concrete and busted up my face. Then i took Trileptal and also got very dizzy the second year. Seems to be a bad year for me. I am now in the first year of baclofen along with 150 mg of trileptal just for legs cramps. Not sure how often to take it, i get spasms 4 am - 10 am
I hadn't heard of the ER Baclofen either so I did a search on it. I found it in trial forms called IXP056, but can't seem to find anything passed Phase III. It is mentioned on 1-2 MS sites, but again, not past Phase III. I can't find what happened.
Addi
I can see taking it on a as needed basis, as long as you don't go over your daily dose for it, or take a lot at one time. And of course staying ahead of the pain.
I've never heard of the extended-release Baclofen either. Accupuncture I might try, but definitely not Botox.
Thanks,
Kelly
About a month ago, I attended a seminar hosted by Ampyra. They had a very good MS doctor who addressed "innovative treatment for spasticity." He suggested extended-release Baclofen. I didn't know there was such a thing.
Also, he suggested accupuncture and botox.
I don't have spasticity but I have pain and have since tried accupuncture. It worked great!
I'm on a 80 mg per day dose... I've found that the key to this and my other medications is keeping it in my system... If I can stay ahead of the pain then I can usually keep it in check...
It's when I accidentally miss a dose that gets me into trouble... Always Stay Ahead Of The Pain!!!!
I'll be praying,
Carol
The max dose is 80 mg/day. The serum half-life is 6-8 hours. This is in the prescribing information. It can be taken as a regular scheduled dose 3 or 4 times a day or as needed (PRN). Doctors have different opinions on this.
I started out with 10 mg at bedtime and then went to 20 mg. Now I take 20 mg tree times a day.
Bob
Thanks Addi. I'm glad that we have Baclofen. They had tried several other meds, before starting this one, and they didn't work at all. Instead of taking 2 at a time, now I'm trying to take one at a time and have the doses closer together.
Hugs,
Kelly
Kelly-
Even though I now have the pump, I still have spasticity at this point. I have not reached a good dosage yet so still increasing at this time. But, I have to agree with Lulu regarding how long it lasts. That is what I had heard also. Something else that you may not know....when you take the oral Baclofen it has to travel through your body and organs before it gets where it needs to. By the time it gets where you need it, you only get approximately 30% of the dose. :(
I am most stiff in the am and around the dinner hour.
What I wanted to add here is like what red said. The stretching is most important. Every day...even if you dont feel the stiffness and/or pain.
Hugs,
Addi
Thanks Red. That's a very good reminder - I really need to do a better job of stretching.
I was on 30mg a day, and this new neuro said that that's way too low for me.
Thanks,
Kelly
Thanks Ess and Lulu.
I definitely notice it more in the mornings (hence my early morning post). My legs feels so tight & stiff, like they don't want to move, and lots of burning pain on my hamstrings. I didn't know that you could take it every 5-6 hrs - and I didn't want to overdose. Maybe I'll spread mine out more, so I have more coverage for my daily dosage. I'm always up during the night going to the restroom. Maybe I'll even take one when I get up, too.
Thanks,
Kelly
I am on 60mg. too but I space it through the day. On bad days I take 10 or 20 mg. more though, with the larger dose at night. When I get myself more comfortable at night, I am more likely to get on top of it the next day.
Do you stretch out several times during the day or perhaps swim? When I spend time stretching I do better.
Maybe a different muscle relaxer too.
Red
Kelly,
I'm on baclofen as well and my dosage is 80 mg, but honestly I don't take it all the time at that strength throrugh the day. My understanding is every 5-6 hours is a good schedule. Taking it 8 hours apart means the prior dose is no longer working and you are starting from zero each time. I hope that makes sense.
You also want to be in tune to when the spasticity is at its worst for you - some people really have problems at night and need a big dose before bed. I notice in the morning that for me that is my most important dose to get me moving smoothly.
Max dosage can go higher, according to my msologist- you only want to do that with some specific guidance from your doctor.
best, Lulu
Hi Kelly. I'm lucky enough not to have spasticity but have been curious about this med. Did a bit of googling, and learned that the max dosage is 80 mg/day.
At that level, according to drugs.com, it should be taken 4 times a day, as evenly spaced as possible. Naturally it isn't necesarry (I think) to get up during the night to take it, but I'd be reasonably compliant with that schedule. Anyone who takes meds exactly on the dot all the time is being a bit obsessive, at least in my opinion.
Maybe you don't need more than 60 mg, but can you consider taking it more often? If every 6 hours would help, it might be worth trying. Have you asked your neuro?
I'm sure some baclofen veterans will check in here and help.
Best of luck,
ess