How do you dose your Baclofen?

[dkcarl62]

I am on 60 mg daily. I take one 10mg pill every 4 hrs round the clock. If I'm having a bad day, I might go up to 80 mg. I've never tried cutting back on a good day. I am suffering a degree of cognitive impairment on 60 mg, so increasing the dose is a choice between two evils.

I can't get the same answer twice on what is the 1/2 life of a dose. I'm concerned about it depleting from my system and not being able to move in bed, or be too stiff to get out of bed.

My neuro is suggesting I can take 2 tabs 4x day, or a dose every six hours. Does that sound about right to you?

Deb

 

[Ells]

Hi Deb,

I take my Baclofen 3x day - it's recommended to take it 2-4x day on the info on my pills.

Re half life: this is what it says on info leaflet of my pills -
"Elimination
The plasma elimination half-life of baclofen averages 3 to 4 hours. The serum protein binding rate is approximately 30%.
Baclofen is eliminated largely in unchanged form. Within 72 hours, about 75% of the dose is excreted via the kidneys with about 5% of this amount as metabolites."

Ells.

 

[dkcarl62]

Thanks for the reply, Ells. So I assume you are also on 60 mgs? That means that you are dosing every 8 hrs? You gotta be running near empty before every dose. No prob with spasticity?

 

[Ells]

Yep, 20mg t.d. 7am/3pm/11pm.
I'm ok for about an hour if they're late, except for 7am ones, after laying in bed all night!!
I also take 4mg Tizanidine @11pm.

 

[Bulldog29]

I was prescribed baclofen back in the summer by my first neuro, he only told me to take it when I was having the cramps. Dr Elliott told me in January I needed to be on it everyday. I'm up to 40 mgs per day. 20 at night before bed, 10 in the morning and another 10 normally about an hour or two before I make the long trek from my desk to the parking garage. I definitely see benefit in the morning but sometimes I wonder if the meds are causing more gait problems. Seems like things started getting worse when I started taking it everyday. Probably just coincidence.

 

[affected]

Bulldog here is how I've come to understand it.

When spasticity is present, because it creates so much extra muscle tone, it can appear that you are steadier and stronger because of the tense muscles. When you take Baclofen and the spasticity is reduced, this means the muscle tone is reduced and so it can seem that you are weaker, less steady or clumsy because of the reduced tone.

You aren't actually 'getting worse' you just don't have all that increased tone that was causing other issues. Devil and the deep blue sea stuff I'm afraid.

 

[Ells]

Bulldog,

Tillie is right.

It can take a while to find the correct dose of Baclofen to manage spasticity and you have to get to know your muscles.
I need higher muscle tone during the day to weight bear, but need lower tone in bed.

I started at low dose and titrated up to find a balance.

Ells.

 

[billbell52]

I tried baclofen when I started having a lot of problems with walking and needed a walker. I found that even on small doses it made my legs feel rubbery and I actually felt less safe on it. It also made me sleepy and more prone to accidents. I started back on it to address leg cramping at night. It did help that.

 

[ShiftKicker]

I was prescribed baclofen right at the beginning, and was advised to keep knocking it up higher and higher because my spasticity was getting worse quite quickly. It turned out that I had a strange response to it where IT was actually making my spasticity worse, and compromised my breathing and swallowing as well. After backing down (don't stop it cold turkey!) I moved to Tizanidine at night. This has worked well for me for quite some time, though I have recently started taking 10mg of baclofen at night along with the TIzanidine to combat spasticity keeping me awake.

Good luck.

 

[Bulldog29]

So, if I'm understanding you, I should take less during the day when I have to do a lot of walking around and then more at night? Could that be why I'm feeling so clumsy and awkward in the afternoon after my second dose of the day?

 

[dkcarl62]

Fiona, how did you determine the baclofen was making it worse? Most people, or at least me, would interpret an increase of spasticity as a need for more baclofen, not less. What is your daily dose now?

 

[ShiftKicker]

Deb,
I discovered it was Baclofen making my spasticity worse in a kind of backwards way.

Because my spasticity was getting worse quite quickly, and it seemed that Baclofen was not able to keep up with it, my doctor recommended I try Tizanidine instead. In order to take Tizanidine, I had to back down from taking so much Baclofen (80mgs daily) first. As I reduced my Baclofen dose, my spasticity improved, and my swallowing/breathing issues disappeared. So I went completely off Baclofen and started taking just Tizanidine, instead of a combo- as was originally planned.

Currently, I take 6mgs Tizanidine and 10mg Baclofen at night. I also take 50mg of diphenhydramine (ingredient in Benadryl) and an oral preparation of cannabis (CBD, no THC) at bedtime. I find this combination works best for me. I do not take anything during the day, as anything seems to make me REALLY tired- fatigue has been my primary issue from the start.

I have just made a request for referral to a specialty spasticity clinic. It deals with not just MND related spasticity, but stroke, brain/spinal injury and other types of spasticity as well. As the local ALS clinic seemed to be perplexed by my spasticity and what to do with me, I'm going to see if this specialty clinic can view my exercise needs and fatigue issues with new eyes. If they come up with different meds or ways to manage spasticity, I'll report back.

 

[Ells]

@Bulldog - too difficult to tell you, personally, what to do!!

But, what what works for me is to have higher muscle tone during the day.

Good luck with whatever you decide.

 

[Bulldog29]

Thanks Ells, I'm going to try moving my dosage around and see what results I get. I go back to the doc on the 22nd so I should have some data to share with him.

 

[ShiftKicker]

Bulldog-
Sorry, I realize I didn't answer you directly. I don't take anything other than (sometimes) a NSAID during the day. Anything that helps with spasticity makes me even more fatigued- so I save all that for night time, when I can sleep.

I just want to make sure people don't think I'm an anti-Baclofen crusader. It just didn't work the right way for me. I often have adverse or opposite responses to medication. Baclofen has been a life saver for many people, but it can take a while to get the correct dosing. It can be dangerous to mess around with unless you are under direct care of a physician, as reducing it suddenly or quitting it entirely can cause some pretty awful side effects in some people.