Baclofen

[Suzannah]

Hi PLS and UMN folks and anyone else who would like to comment,

I want to talk about Baclofen.

I have been taking it since March for spasticity, but I have been on a pretty low dose just at night. When I went to go see the doc in Houston, he said I need to be on a much higher dose. So, I've been working on increasing the dose and taking it during the day.

However, as I'm increasing it, my spasticity issues suddenly seem SO MUCH worse. I'm waking up in the mornings with arms rigid in 90 degree angles and clenched fists. My foot is turning in and under way more than it has been, which is making it harder to walk. And I've been getting truly awful cramps/spasms that cause my ankle to flex up, my toes to curl down hard, and my foot to turn in, all at the same time. It makes the muscles by my shin feel like they are going to tear away from the bone.

I can't figure out if this is some kind of weird "rebound" effect where things improve because of the increased medication and then feel worse when it wears off. Or if it is just suddenly allowing me to feel the full extent of the tightness and stiffness that I have never fully been able to feel before (it's been this way so long that it just seemed normal to me). Or ....

Has anybody else experienced anything similar? Seemingly worsening spasticity symptoms with an increase in Baclofen?

And just because I'm curious, what kinds of doses are people taking?

Sincerely,
--Suzannah

 

[lgelb]

Suzannah,
Why would the doc recommend (and you agree) to increase the baclofen if all was going OK? It's a dirty drug and I wouldn't titrate up beyond strictly necessary doses. Anyway, the only way to begin answering your question is to titrate [slowly] back down.

All,
There is pretty much no drug related to ALS that anyone "needs" to have a particular dose for, apart from antibiotics. The guide should be patient comfort.

 

[Mike in Maine]

Suzannah,

Agree with Laurie, Baclofen can be a nasty drug and you should only take as much as needed to control your spasticity issues. If I were you I’d call the Doctor today and express to them the issues you are having. You may be having some type of negative reaction. I take 90 mg of Baclofen a day 30 x3 and without it would not be able to function. I would crawled up into ball and not be able to move very well. Even taking that much my spasticity issues continue to increase but my Doctor will not cross that 90 mg line. We tried Tizanidine, but man did it mess me up and had to stop. I think what drug combo that works for each of us is an individual thing and needs to worked with our Doctors constantly. As I said I’m on Baclofen and Diazepam 5-10 mg at night to control the leg spams. Good Luck

Mike

 

[04grace2]

Hi Suzannah,

I have noticed the same thing. I had been taking 10 mg in the morning and 10 mg at night for several years. I began to feel that I needed to add a little more during the day, and my doctor suggested the same thing after his examination. I started by adding 5 mg, and I noticed the same increase in spasticity, especially in my arms which is such a strange and uncomfortable feeling. I think it has gotten a little better, so it must take some time for my body to adjust. I definitely do not want to take more than I need, but like Mike said, I would not be able to function without it. I even had scary swallowing problems before I started taking it a few years ago, so I definitely do not want to experience those again. The baclofen has taken care of the swallowing problems so far.

 

[Kosmoskatten]

It is important that you contact your neurologist if the dose is causing issues. Baclofen is a drug you need to fine tune, I had just a little too much when I started on it and felt an increase in spasticity. We downed the dose oh so little, and now it works wonders.

 

[Suzannah]

Hi,

Thanks for the responses.

The reason I was told to take it up is because my foot is starting to turn in and under pretty badly, which is interfering with my ability to walk. I was told that the only way to change that was to take more medication. No one has given me an actual amount of the "more" that I should be taking, though, so I've just been experimenting. I will try backing down on it some. It's interesting that others have had the same experience of increased spasticity. I thought maybe I was just crazy.

@04grace2 - yes, I agree, the spasticity in the arms is super weird and uncomfortable. I have a "most-likely" diagnosis of HSP, and it's not even "supposed" to really affect the arms (though it can). *grumble* I'm always alarmed when I'm laying on the couch watching tv and look down and find that my arms are tight against my chest with hands in fists clenched tight (like people who have had strokes).

@lgelb - could you expand on why baclofen is a "dirty" drug? I haven't really heard too much about that and am very interested to know!

Thanks!
--Suzannah

 

[MaxEidswick]

>@lgelb - could you expand on why baclofen is a "dirty" drug? I haven't really heard too much about that and am very interested to know!

me 2 ...

 

[GregK]

A quick visit to Google indicates that folk call drugs 'dirty' if they've many side effects....

 

[Clearwater AL]

The only thing I could find was Baclofen may cause a "dirty" drug screen test (employment and etc). It's not classified as addictive BUT you can't just stop taking Baclofen (as all of us on it know and have been warned).

Me too @lgelb... why did you refer to it as a "dirty drug"?

Greg... Golly, some of the drug commercials on TV with the after warning of side effects longer than the commercial itself are worse than what it's supposed to cure. "Hell, maybe this rash ain't so bad after all..."

 

[IhavePLS]

If you are prone to seizures, baclofen is notorious for lowering the seizure threshold (trust me, I know).

Highest dose = 90 mg....beyond that, you should be taking Zanaflex or Valium. Robaxin works well for some.

Zanaflex can be very hard on the liver (trust me, I know #2).

Mike

 

[bigmark1954]

I am trying to hold off on the Baclofen, at least until I lose my ability to be mobile. My doc agrees that I should not take it until I absolutely have to.

 

[Suzannah]

@Big Mark - what reasons did your doctor give for wanting you to hold off for now?

What I find so interesting is that everything I read on the internet (and yes, I know not to believe everything I read) seems to indicate that Baclofen is a fairly benign drug, as far as these things go. I've read that in many, many places, and it always seemed surprising, because really, how can any drug be particularly benign?

I know it can cause fatigue and sometimes liver issues, but I haven't really read about much else. My doctor didn't seem too concerned about anything, though she did say I should periodically get liver function bloodwork done.

@Mike - what kind of liver problems did you have? At what dose?

 

[MaxEidswick]

>seems to indicate that Baclofen is a fairly benign drug

well after my clinic prescribed it, I researched and saw that it was addictive. I told Appel I did not want to take something addictive. He pointed out I had a terminal illness and the B could help with the cramping in m throat.

So I take it. I doubt that it's going to kll me . I do take as little as I can until the cramping starts again.

 

[Nikki J]

Suzannah sometimes with ALS we need the spasticity to counterbalance the weakness. My sister tried baclofen when she could still walk and stopped it right away as the tradeoff in mobility was not worth any increase in comfort now she takes it because she can't walk or stand anyway. I think it depends on the degree of umn/lmn involvement whether it has a bad effect in ALS

 

[Clearwater AL]

I just pulled out the data sheet for my Baclofen prescription... after re-reading the cautions and possible side effects I really wouldn't call it a 'benign' drug.

PS. There are some prissy people who are reluctant to Baclofen because they have read it is also given to recovering alcoholics. I can imagine coming off a 20 year bender may cause a little spasticity too.