48 replies to this topic

[leothelion]

i have been taking baclofen since august 2009. i am wanting to ween off but i really don't know why I should, besides the fact that i don't like being dependent on medicine. i mean my spasm's aren't too strong. my spasms snap the velcro on my leg rest (strap behind my calves). My hamstrings are super tight, and occasionally my fingers tighten up. I also have lower core spasms that are nothing to be alarmed about. I'm trying my best to control them. i take 20mg three times a day.

whats the pro's and con's?

why is my gut telling me to get off as soon as i can?

please help.

Edited by leothelion, 16 March 2010 - 04:23 AM.

[azcaguy]

leothelion, on Mar 15 2010, 09:05 PM, said:

i have been taking baclofen since august 2009. i am wanting to ween off but i really don't know why I should, besides the fact that i don't like being dependent on medicine. i mean my spasm's aren't too strong. my spasms snap the velcro on my leg rest (strap behind my calves). My hamstrings are super tight, and occasionally my fingers tighten up. I also have lower core spasms that are nothing to be alarmed about. I'm trying my best to control them. i take 20mg three times a day.

whats the pro's and con's?

why is my gut telling me to get off as soon as i can?

please help.

I have been on 40mg4X daily. You are taking it because it works.
I live a healthy lifestyle. I eat right & dont put anything bad into my body. This med has No long term Bad side effect. it might cause you to be a little tired till you get use to it.
Other than that. It's fine

[In The Wind]

40mg 4X a day? Man, I thought that I was on the max at half of that...and I still have spasms that could break a leg if they hit someone or something. I've been doing therapy along the lines of that used by project walk (We have a local guy that has been out to thier training program) and he wants me to stop taking baclofen. But as of late these spasms are getting incredibly strong, the knee to chest then straight out ones, and I don't know if it's a result of the therapy mking my legs stronger or what, but I've decided to take a break and see if it calms down some.

But for the OP, if you can control your spasms through stretching or exercise, I would think that that would be better than taking the drug long term.

[Tetracyclone]

In the Wind-

Conventional wisdom where I rehabbed (and Taiwan sees a LOT of traffic accidents) is that exersize increases spasms for a while, then it calms down or even gets better. My experience bears this out, with the increase lasting about 3 months. At two years out my spasms are much less than one year out. So the exercise program needs at least some time to work.

Leo-
Easy enough to test your gut feeling by reducing your dosage slowly. No sudden surprises, please. I also find that intestinal distress and weather increase my spasticity a lot and increasing my baclofen at those times doesn't help a bit.

[topperf]

I take 10mg twice a day, and I'm working on getting off of it with time, doing like Tetra is saying - reduce slowly.

[sweeper]

My son weaned himself off Baclofin with no problems. But then again his sparms were never so strong that he would have thrown himself out of his chair.

[E-DOG]

The effects of Baclofen, long term.

Imagine if you will, A head of iceberg lettuce that doesn't spasm too much.

E

[DreamWeaver]

my husband saw a new doctor who wanted to increased his baclofen from 10mg 3x daily to 20mg 3x daily but first did liver function test (blood work). apparently it can have adverse affect on the liver for some people.

[Stickman]

I was on 20 mg 3 times a day but weened myself off as it didnt help my spasms, and seemed to mess with my nerves, was having increased anxiety.

[The Black Sheep]

I used to take 40mg x4 a day and went off of it for a couple reasons. I began taking it when I was first injured, but when I left the hospital I didn't want to anymore. The spasms aren't that bad for me, and I went about 9 years without it. About 2 years ago a neurologist told me I should try it again, thinking I'd gain some function without the support of spasms. I can stand with a walker, but without any spasm, my legs are very, very weak. Anyhow, some people become very tired while taking it, and it took some getting used to. I went through some really down and depressed months, which is sometimes a side effect too. For me, those were the 2 main reasons I've gone off of it again.

On the flip side, the Baclofen really helped my bladder control. Everytime my belly muscles spasm, I feel the urgent need to pee, and the baclofen did really help reduce that.

[hurbshankin]

I'm taking 100 mg throughout the day. My spasms are still so strong that they drive me crazy. I went to Project Walk. I tried weaning off but the spasms got so ridiculous I couldn't move without setting them off. Whole body spasms that would make rigid as an I-beam! I can barely keep myself in my manual chair. I'd love to find something more effective besides the pump.

Hurb

[spot]

Being a "no pill" kind of person, I would like to get off the baclofen. I haven't heard of any bad long term effects, but I just don't like pills. However, with it I can breathe reasonably well, not painlessly, but sufficiently. Without it, I can't. Breathing beats not-breathing anytime.

[unome]

Hi, I'm a C4 incomplete quad and in the 80's when I had my accident I was put on 20mg Baclofen 4 times a day and 10mg of Valium 2 x a day and for 11 years felt like crap on it so stop taking them.

I'm now 20+ years post accident and am glad I stop taking it..
My spasm has stayed about the same but my tone has increased and I find I must be very diligent about exercise and stretching.

Just recently; I was put on dexamphetamine for something unrelated and thought that it would make my tone and spasm worse
but to my surprise it has made it a 100 times better. I no longer get any of those small jittery spasms and large ones that almost use to brake me in two have almost completely gone.

I have had some good increase in my muscle motor befor I could not lift my feet and was wearing two AFOs
now I am not haveing to wear any.

I have asked the spinal clinic about this as I thought I had discovered something new and amazing and was all excited.
I got the normal shrug of the shoulders and the blank face we don't know why reply.

I would love to know if this is unique to me or is this something that could be useful for others.

Would also love to know what others think.....

[Tetracyclone]

Unome- that is a fascinating reaction to dexamphetamine, now that i googled to read about it.

Who know why, but it is a nerve med. Think I'm not tempted to try though..i need my appetite.

[ray_m]

Baclofen was making me feel like I was in a fog. That not quite present feeling (granted that my body was in that state but I didn't think my brain need to be so too). I took myself off of it. There've been a few times when I've missed it (like when a cold-front is coming and spasticity increases) but I've been able to stay off of it. Should have weened down slowly though. The first day without it I was stiff as a board.

[In The Wind]

hurbshankin, on Mar 18 2010, 07:14 PM, said:

I'm taking 100 mg throughout the day. My spasms are still so strong that they drive me crazy. I went to Project Walk. I tried weaning off but the spasms got so ridiculous I couldn't move without setting them off. Whole body spasms that would make rigid as an I-beam! I can barely keep myself in my manual chair. I'd love to find something more effective besides the pump.

Hurb

This is me. I call it "surf board syndrome". Where you go straight out stiff as a board and slide out of your chair.

I've really been noticing the fogginess lately. really shows up at work. I think I'll start backing down and try without it...

[unome]

Tetracyclone, on Mar 20 2010, 05:05 PM, said:

Unome- that is a fascinating reaction to dexamphetamine, now that i googled to read about it.

Who know why, but it is a nerve med. Think I'm not tempted to try though..i need my appetite.

Hello again, it has not affected my appetite at all. I'm on a very small dose. I only take 2.5mg at 7am and 2.5mg at 1pm
the only negative side effects I've had is a bit of a dry mouth for about 3-4 days now it's back to norm.
I've also had an increased libido. Guess this can be a Positive or negative, depends on the many things.

It has also help me void on sensation I have alway had to tap and press on my bladder now I just void on sensation
but do suffer urgency to urinate.

[slyd]

My 5 cents . . . .

Being incomplete, I have limited function of my legs which enables me to walk* a little with two sticks. Every time I have tried Baclofen (Lioresal here), it suppresses what little function I do have, and cannot even do that*, never mind the "cabbage-head" that comes with it.

It is obviously a serious CNS depressant, and I have found Gabapentin to be my saviour. Baclofen DOES work for spasms, but it takes away other things.

Try other drugs too, there just may be a milder more effective solution!?
Whatever strokes your cat !!

[mellowgator]

i was perscribed 10 mg of valium 4x times a day in rehab. i had to go off it when i got pregnant. once i was off the valium i could move my toes! i tried baclofen but it made me dizzy and after my first time taking it made me sleep for 16 hours straight. i can't take that stuff i got a life that i have to live.

[S&W Winger]

Main reason I want to stop taking the 80mg/day I now take (20 every 6 hrs) just happened: I fell asleep on top of the keyboard now, again...

I use the seatbelt on my wheelchair along with velcro strips to tie my ankles to the footrests, to keep my big fat surfboard body in the chair...the velcro also helps to prevent me from running over an errant foot or two after one of those super spasms...

I have set-up the trial for the Baclofen pump...as soon as I have a couple of other more pressing (??) surgeries...hoping to get off some of these meds (besides the Baclofen: Valium, Oxycodone, etc.) via the pump with a little morphine added...

Still think "spasm" is too kind a word to use to describe these things that rip the muscles from my ribs, tear at my skin, creak out my bones, and cause my head to pound and my teeth to grind...

Both the immediate side effects and the liver damage concern me as well, I wish I could just Live with the spasms and no meds...but tried THAT dance once or twice and never again...

[M Tustain]

Well I've been on Baclofen now for a day and what a diffence. I still get some spasms which I like, and I still have some tone when I straighten my legs (which is perfect) I feel weaker in my function but hopefuly as I'm not so tight everywhere I will be able to strengthen everything up better. For anyone who is thinking of taking the drug and is early on in rehab, I would really recomend doing what I did and take Dantrolene first. I honestly think if I had taken this drug when they first tried to put me on it, I wouldn't have any of the function I have now. I feel okay to take it now as I've got strong and I know what function I do have, a lot of it I would never know about if I was on this drug from the start!

Just to confirm I didn't. Really get bad spasms, but my tone was incredible, not me or anyone could bend my legs and my feet would point into a tensed up drop foot position. I wasn't able to stretch properly and could truly stand for as long as I wanted just on the tone. Even after one day, my legs have gone normal and mostly tone free, you don't realise how much it's affecting your life until it stops. I had a shower yesterday and was so nice and relaxing for my legs not to be straight and tight making it really uncomfortable and dangerous. I'm much happier and when I get the dosage correct it should help me tremendously.

So basically in my opinion if your in the first year of your injury I would not recomend taking it, but if after that you still need it then use it wisely. I don't intend to even stay on the drug Im just hopingto get them nice and stretched, then ween off very slowly and start again. The body is so clever it should be given a chance to rectify it without drugs!

[greybeard]

M Tustain, on Mar 25 2010, 05:11 AM, said:

Well I've been on Baclofen now for a day and what a diffence. I still get some spasms which I like, and I still have some tone when I straighten my legs (which is perfect) I feel weaker in my function but hopefuly as I'm not so tight everywhere I will be able to strengthen everything up better. For anyone who is thinking of taking the drug and is early on in rehab, I would really recomend doing what I did and take Dantrolene first. I honestly think if I had taken this drug when they first tried to put me on it, I wouldn't have any of the function I have now. I feel okay to take it now as I've got strong and I know what function I do have, a lot of it I would never know about if I was on this drug from the start!

Just to confirm I didn't. Really get bad spasms, but my tone was incredible, not me or anyone could bend my legs and my feet would point into a tensed up drop foot position. I wasn't able to stretch properly and could truly stand for as long as I wanted just on the tone. Even after one day, my legs have gone normal and mostly tone free, you don't realise how much it's affecting your life until it stops. I had a shower yesterday and was so nice and relaxing for my legs not to be straight and tight making it really uncomfortable and dangerous. I'm much happier and when I get the dosage correct it should help me tremendously.

So basically in my opinion if your in the first year of your injury I would not recomend taking it, but if after that you still need it then use it wisely. I don't intend to even stay on the drug Im just hopingto get them nice and stretched, then ween off very slowly and start again. The body is so clever it should be given a chance to rectify it without drugs!

Why the duplicate post?

Edited by greybeard, 25 March 2010 - 07:46 AM.

[M Tustain]

Sorry i didn't mean to i didn't think it had worked but i must have been looking at the wrong screen. My bad!

[dsindc]

leothelion,

I've also been on baclofen (40mg daily) a similar amount of time and I am currently starting to ween off despite what seems to be a slow progression of ever-increasing tone and spasms since the beginning of this year. So maybe I'm doing the opposite of what I ought to do, but I'm on a mission..

anyway, experience so far is a little rough. I'm doing 5mg off every 10 days but may have to slow down the rate because rebound spasms are crazy, especially day after a reduction. also been having vivid dreams, moodiness, temper- withdrawal symptoms possibly.

I'll keep you updated on further changes.

[M Tustain]

Well everyones tone and spasms are different, I just know that for me I wasn't taking any drugs for about a month and I just couldn't do any physio my legs were so bad! I would love to be able to come off of them but I've accepted it's just not possible yet.. However, as I said I think if I was on Baclofen from the start I don't think I would have half my function so give it a go dsindc!

[Tetracyclone]

Dani,

I too experience an emotional aspect of the physical hypertonicity when I try reducing my dosage. Sometimes more than others. I can feel anxious.

You know me- since my priority is function so I take the drug if I find I cannot function as well without it.

Come hot weather I will test another round of reducing.

[mikeC5/6]

There were too many replies for me to read them all so if I'm repeating sorry
When I rehabbed originally they put me on baclofen
when i went to an actual good rehab place the first thing they did was take me off baclofen to improve my function
in walking and stability. I have spasms but they dont impact my daily activities so they are not an issue. I also know that baclofen is hard on your liver and i am pretty sure i heard somthing along the lines of baclofen use makes you unellgible for a liver transplant should you need one 2 years within use of baclofen.

[S&W Winger]

Rather than edit my post above, I'd just like to add my latest decision regarding Baclofen:

Instead of going ahead with the Bac pump trial...like dcindc, I've also started to wean off the drug(s)...only, not just Baclofen, but oxyodone and later, Valium and Lyrica as well...

I am sick and tired of being sick and tired...I also do not want to be beholding to the pain MD and Living in fear of a pump malfunctioning or the risk of it running out.

Even though my spasms are some of the worst that my MD's and PT have witnessed...I feel that enough PT and ROM should help. If worst comes to worst, I will try smoking pot (even though it has been about 30 years! ).

When I came home from the six months of hospitals about eight months ago, I was on 15 meds...I had three of those compartmentalized trays of drugs, and spent A LOT of $$ in co-pays. I have since cut out about half the crap already...with no problems or truly ill effects.

Yes, withdrawal, even weaning, is quite uncomfortable...however, I am so uncomfortable all the time ANYWAY, what difference will more discomfort make? If anything, I will have a new baseline of what I REALLY need along with perhaps a much, much lower dose of much less meds.

This past week, I've weaned down to HALF the oxycodone dose I have been on (for years, as I had DDD and arthritis before my SCI, and was in dire pain all the time already - not that all those drugs even helped after while!)...I am in pain even with the pain meds...I have spasms even with the Baclofen...I want to see what's REALLY what. AND as far as Lyrica! Sure it helps neuropathic pain....but at what cost and for how long also??

SO, back to the original poster: The pro's and con's of taking Baclofen? Pro: Baclofen does help spasticity, tone. Cons: addictive (in that, though not any "fun high" associated with it, the body becomes dependent); liver damage; other body system issues; and, did I say "addictive?" I get so sick when I am even one hour late with a dose that my body vibrates with a sick roar, and my spasms are worse than they were before ever taking Baclofen;dependence upon drug(s) equals dependence upon MD, and aren't we all seeking as much independence as possible??

I know this a 180 degree from my prior touting of the Baclofen (and other pharmaceuticals to aid SCI), however...I am truly sick and tired of the healthcare" industry (drug companies, insurance companies, MD's, et al) and these drugs ruling my World...and as someone with a SCI, struggling to get through each day, the drugs which I once thought of as a savior, as the only way to get through these days, now appear to be one of the main hindrances to coping in a positive fashion, and in getting on with Living as full a Life as possible...

Finally, I will end the rant and step quietly down from the soapbox...until...

[skeaman]

i am on 120 ml a day 4 years past i do all the stretching go on the bicycle still bad thinking of getting a pump in don't want too but the c--t s has wore down but one must keep going needless to say my spasms as keep all my tone the only reason why i have not is i think we will see so thing coming thought in a year or two ? it makes a chance from 5 years

Edited by skeaman, 06 April 2010 - 08:52 PM.

[Tetracyclone]

This thread has taken on a yummy messianic tone over time. We are due for commentary from E-Dog.