Baclofen - What can we expect?

[Miss]

My husband started baclofen yesterday. Looking at the side effects, I am a bit confused. Weakness is one of the main side effects. He is taking it because his legs are so stiff - how does it help? Has anyone noticed any bad effects from it? My husband is declining so rapidly, I don't want to see him take anything that would speed it up!

 

[Zaphoon]

Missy,

I'm sorry to hear about your husband's diagnosis.

Regarding baclofen, it's just one of those things you are going to have to wait and see when it comes to any side-effects.

I've been taking it for over a month (10mgs 3x a day) and haven't noticed any problems but also haven't noticed it doing a lot of good.

 

[BrianD]

Hi Missy,

Baclofen can help with the stiffness. This is definitely a medication that affects people in different ways. And there's no one-size-fits-all dosage either. The most common side effects that people have reported are sleepiness, muscle weakness, fatigue, and urinary frequency.

My neurologist recommended that we start with a smaller dosage (20 mg daily) and gradually work up (at least two weeks for a given dosage) until we found a good balance between stiffness relief and side effects. I'm now up to 50 mg daily. In my case I definitely noticed sleepiness and fatigue, but they got better over time. The first two weeks I was really wiped out from taking it, but now it doesn't have that magnitude of a side effect. Note you can get some additional information on the PLM website as well (not that I typically like to advertise other websites)

For me it was a good trade off. My stiffness was bad enough that it was causing me to fall sometimes. So I'll take a little additional weakness/fatigue to help smooth out my walk. My best understanding is although it may cause additional weakness, it's not actually speeding up the progression (causing the nerves to die quicker).

Brian

 

[shelleynshaggy]

We have not noticed any side effects but can definately tell when he misses a dose especially before bed. If he forgets he gets "tremors" (not really the right word - but for lack of a better one) at night - to the point I can't sleep. Jim is up to 60mg/day. 30 in Oct, 40 in Jan ... increased to 50 and 60 this month

 

[JeffP]

hi miss sorry to hear of your husbands progression .ive been on baclofen for almost 11 months 30mg. a day no side effects it works on keeping your joints from becoming stiff i feel for me it helps ive only experienced stiffness a couple of times .try it and see how it works its worth the try take care and god bless

 

[sadiemae]

Missy, How is the Baclofen going? Les has been on it for 9 months, and is on 40mg a day. At the pain clinic we go to, the Doc said he has some ALS patients on 100mg a day, also some on a Baclofen pump. This is one of these meds that we do not know how much benefit we are getting, but do not want to find out by going off of it. This is also a med that if you do stop it, you need to do it gradually. We did stop his cholestrol (sp?) meds, because it also causes muscle weakness, plus there is some research that suggests that a high cholestrol can extend the life or slow progression of ALS. HUGS Lori

 

[ValRunk]

I take 60mg/day of baclofen. The dr started me with 10mg/day and told me to increase by increments of 10mg/day each week until the fatigue/tiredness I was feeling outweighed any benefits I was getting from it. I didn't see (or feel) any difference but my husband said it helped my gait tremendously. He said that before I started taking it I looked like I was walking on stilts. I didn't feel any difference (except tiredness) until I stopped taking it (upon another drs orders and cold turkey too). I, then, felt a marked stiffness (especially in the AM).

 

[irismarie]

IT says specifically in the instructions NOT to stop suddenly...doctors!
I do not feel any better on it, but how do i know if the continuing deterioration has anything to do with the drug. Much more breathless, itching/creepy feeling, oedema everywhere since taking it but that could jsut be the progression. It might even have been worse without. how can we know anything?
I have the Rilutek sitting in my drawer but have not ha the courage to start it yet.

 

[sadiemae]

Irismarie, with the Rilutek, if it doesnt agree with you, you can stop it, but a lot of PALS do not have any trouble. From what I have read, you will know pretty quick if you can not tolerate it. As KayMarie says, "Put on your big girl panties" I am so glad she is back!HUGS Lori

 

[ValRunk]

My neuro in NE had referred me to a neuro in CO 'cause she couldn't figure it out. He prescribed baclofen and sent me back to my neuro in NE. After the original prescription from her read 10mg/day for 6 months, I called and reminded her that I was slowly s'posed to increase it (under her supervision), upon her orders we then went from 10 to 20 to 30 to 60, then she examined me again after 6 months, said she didn't think it was doing any good and took me off completely. I was also on ANOTHER muscle relaxer (per her orders) for something else. She took me off of THAT one too (at the same time, cold turkey). Needless to say, I was a little loopy. I, then, went back to my dr in CO 'cause I was beginning to feel like the rope in a tug-of-war contest. He put me back on the baclofen and told me not to see her anymore for my care.:roll::roll:

 

[irismarie]

THat is TERRIBLE, VAl. How DARE they make decisions like that. They have our LIVES in their hands. Who can we trust?
As I pointed out to the doctors in hospital, we only experience this once whereas they should have had many more experiences of it.

Sadiemae, thank you for the pick in the 'non existent" pants.

 

[Miss]

The baclofen seems to be helping my husband's gait. He, too, looked like he was walking on stilts. He is only taking 10 - 15 mg per day right now. I am getting ready to increase it a bit. He doesn't really like to take it mid day, though. It does make him a little weak. Same with the Rilutek. He only takes one at night before bedtime. It makes him too tired during the day.

 

[shelleynshaggy]

I am thinking Jim's needs increased again - he is again "tremoring" at night even when taking 30mg right before bed. When he forgets to take it I can tell - he gets so bad that it almost seems like a seizure.

 

[Zaphoon]

I take 10mg just before going to bed to see if it helps take some of the edge off of my early morning leg muscle spasms. They've gotten pretty painful lately. I'll have some cheese with that whine...

 

[irismarie]

Zaph, have they got no further in sorting you out?