Baclofen - How Much Do You Take?
 

I have been having some bad spasticity pain in my right leg. It's right behind my knee and travels downward.

I have a prescription for 10 mg Baclofen to be taken 3X daily. It's not enough. I have been doubling up and taking 20 mg two or three times daily. Sometimes that's not even enough. I guess I could tolerate the pain....but it gets annoying to never find a comfortable position to sit or lay...so I end up taking the meds.

How much is too much? What does everyone else take?

Kelly - I can't tolerate even 10 mg so I don't take anything. I move around a lot when the spasticity gets bad as I just can't stay still. I also take my Epsom salt bath and that helps quite a bit. For me, I think the Neurontin helps with some of the pain and spasticity. I can't imagine what I would be like without it.:eek: Quite honestly, I don't want to find out.

When I was at the neuros last week, we talked about the baclofen and how it made me feel at the 10 mg. She did say that 10 mg was the starting dose on the baclofen and you work your way up from there. However, since it wasn't working for me, we didn't discuss how high up I could go. Wait, 10 mg made me high enough. LOL So, rephrase, we didn't discuss the maximum dose.;)

If it is not working for you, call the prescribing dr and see if they can switch you to something else.

Kelly,

I'm so sorry to hear about the spasticity you are experiencing :hug:. As you know, I don't have MS but my nanan had Progressive MS and have just asked my mum and she says she took 30mg Baclofen 3x daily for the Spstricity and even that didn't help.

In the end, my nanan ended up having to get the Intravenious (sp?) Baclofen Pump has it was getting to the point where the dosage she needed orally was just too much. The pump worked really well in the beginning but has her condition deteriated, it stopped working.

I have quite a lot of muscle spasms with RSD and my doctor prescribed me 10mg Baclofen but we were finding that sometimes it was making me too "floppy" and wasn't working on the affected areas of my body so we decided to come off it.

I hope you find something that works for you and I am keeping you in my thoughts.

I take 10mg at night, and a 5mg during the day, or afternoon after getting my chores done.

It sounds like you may need to either be bumped up temp to find relief, or you may need to switch over to like a Zanaflex while this thing sorts itself out.

I love epsom salt baths, and or muscle rubs, and ben gay type products. I find that when my spasms get cranking, its best just to stop for the day, and rest. sometimes it take days and days to recover.

I hope you feel better. :hug:

Are you sure it is spasticity, Kelly?

Maybe it's just me (never asked others before), but spasticity always hits both sides (arms and/or legs) at the same time for me. :confused:

Is it possible you are experiencing sciatica or something else? Have you been checked out by your GP?

Cherie

I'm assuming it's spasticity because I have been having it in my hand as well (right hand that is numb) and the Baclofen helps somewhat...just not enough for me to get comfortable. I guess I could take 30 mg at a time, but it would make me very woozy if I did. Baclofen is one of the drugs on the $4 generic list so that helps since I won't have any insurance after the end of the year.

I take 10 mg two times a day. I am not sure that it really helps. My spasticity is usually all on one side (left) from my rib cage down to my foot. I deal more with stiffness and that heavy feeling than with actual spasms. The spasms come and go.

at the peak of my worst spasticity I was on 30 mg, 3 times a day (total 90 mg per day)

it took me months to taper off that high a dose, but it was the only way to find out if the spasticity had faded (it did fade, eventually).

that was back in 2002, when my right foot, calf, and thigh were going nuts.

since then, I get minor spasticity on both sides, and in my feet and toes, and just recently, it has appeared in my forearms.

my GP (hah! try finding a neuro in Belize!) is attempting to import Baclofen for me, and I'm eagerly awaiting news from his office (for weeks now, sigh!)

be very careful with Baclofen around your kitties, it can be dangerous to them, so if you drop any, make sure you FIND it before they eat it:

http://www.palestineherald.com/cnhi/...yword=topstory

I take 10 mg 4 times a day and 30 - 40 mg at night before bed. There are days I can take less, but not many anymore.

Call your neuro - it might help you to add something else to the mix. I have found that the Klonipin that they rx'd for the dizziness / eye movement problems helps with the spasticity, too.

Dosage

Baclofen therapy is usually started with an initial low dose of about 15 mg daily in divided doses and gradually titrated up in a stepwise fashion until symptomatic relief occurs. The usual maximum dose is 80 mg per day.

http://www.answers.com/topic/baclofen

Good Grief!

Here I was thinking my spasticity was lessened, until I read everyone else's dosages!
I do 40-60 mg a day of Baclofen and 4-8 mg of Zanaflex when I go to bed.

I cut baclofen out completely this summer when I was sick with salmonella, along with the zanaflex and my provigil. I couldn't keep them down and the illness was worse than the spazzing and I wasn't getting up and walking for two weeks anyway!

I told the neuro about it and he said to add them back as needed. I hoped that I would be able to cut them out completely, but nooooo. I added the baclofen back, starting at 10 mg, but worked up to previous dose within a month or so. Ditto with the zanaflex. I have more days when I only need 4 mg of the zanaflex, but on those days when I wake up swearing and groaning with leg or hand spasms, I'll do another 4 mg tab. I have to take the baclofen as soon as I get up. I do stretching every day before I get out of bed, but I still walk stiffly until I get going. There's still days when the spasms are right at the edge of my consciousness, waiting to spring on me if I make a wrong move. There's days when the spasms don't let go for days and I feel like I got hit by a car or that my hands got caught in a wringer. I have a splint that I got when I had IVSM one time, I use that to immobilize my hand when the wringer feeling happens.

The pain will be there for days and then all of a sudden...the spasms are gone, until the next round.

My neuro told me to take both the baclofen and the zanaflex (and the provigil!) as needed but to let him know when I get to a certain amount of each.

I'd been on 10 mg three times a day of Baclofen until a month ago, when my neuro upped my dose by 10 mg a day. So, now I take 10 mg in the morning, 20 mg in the afternoon, and 10 mg in the evening.

A couple of months ago I tried to decrease the Baclofen, but the muscle spasms came back almost immediately in my legs. I have dreams of getting off all prescription medications some day, but I also have a low tolerance for pain! :)

Hi Kelly,

I took 10 mg 4x a day, but I could have used 20 mg in the late afternoon when the symptoms got worse. It really helped me a lot. I took it for about 18 months or so while I was finishing my degree and I had to sit and read and write papers and didn't get up to move around much.

For me it was a Godsend and I hope it works well for you when you get to a dosage level that eases your pain. :hug:

I think you make a good point, Wiz. Sometimes it is the lack of stretching, etc. that causes this symptom, and it can let up for months/years when we change our routines.

Also, Kelly, try to notice if it happens once a month, for about a week. ;) I get one bum leg, right where you are talking, at PMS time every month. For me it is sciatica though, and I've had it since the mid-80's (before MS). It used to be the whole leg, but now it is mostly just behind the knee.

Cherie

Mine's behind the knee, too....but it's pretty much all the time and it wasn't around pre-MS. If I stoop down to look under the bed or pick something up it really hurts trying to get back up. The baclofen helps so I'm assuming it's spasticity. I have it in my right hand, too, and sometimes my left hand but not as often. Seems everything happens on the right side for me.

I was taking 10 mg in the a.m. and 20 mg before I went to bed. The neuro said that I should adjust the timing of the dose so that it helped the most when I needed it most. My bad time was in the a.m., so that's why the night time dose was higher.

I, too, tried to wean off it to find out if the spasticity was still there and had a horrible time with spasms. I finally was able to get off it and ended up only with bad tightness in both of my calves--it doesn't go away with stretching either.

It's worse on my right side. But when my back spasmed, man everything was crazy. My reflexes were all nuts. I've NEVER seen anything like it before. The doc was lucky I didn't kick him in the :eek::eek: by accident!

Hope you get some relief soon.

Wow, people take a high dose of baclofen! I was watching a video yesterday that scared me about it...that it can damage your liver.
I just got a new script for 5 mg in morning and afternoon and 10 mg at night...but it's not helping...as the day wears on, the spasticity gets worse.
I do notice that stretching my legs and back helps...I have exercises for all of the tight parts of my body...so that's part of the daily routine (when I remember to stretch, that is:rolleyes:).
I thought that there was some posts back when about Mary Jane helping with spasticity and pain...haven't asked the neuro about that yet, esp since it hasn't been legalized for medical purposes yet in this state. I do have friends in low places that could help me with obtaining it if I wanted to...lol...but I'm kind of afraid to go that route.
Kitty, hope you find some relief...call your dr. you need to get a handle on this pronto. Good luck...let us know how you're doing:hug:

Hi Kelly, I am now taking 30mg 3 x a day and can add another 10 at night if I feel I need it.

When I go back to the Neuro in Feb we are going to talk about changing it for at that time I will have been on Baclofen for well over 2 1/2 months. He feels that over a long period of time your body gets immune to it and you need to switch to something else.

How are you feeling now?

Well, I tried Motrin yesterday instead of the Baclofen and it actually worked better. My leg is much better today but all day yesterday I had back spasms on the right side. Felt like a really bad pulled muscle but this morning it's almost gone.

Since nothing hurts too much this morning I might just lay off the meds for a day and see what crops up. If something starts to give me trouble I may just see if Motrin will take care of it. I still have my prescription for Baclofen, though...at least it's one of the ones on the $4 generic list!

I've heard that too! :)

Yeah, I hear you, RW...but as much as I hate these sxs with spasticity, I am so afraid of MJ...esp the fact that's illegal in my state...I'm a wimp when it comes to breaking the law...:( but I am so worried about the pain/spacicity...esp when I read about how MJ has helped so many...wish ther was a clear answer...

My neuro must only use the typical MS drugs. When I came to him I had trid Zanaflex with no luck. He put me on Baclofen for spasticity and to hep sleep. As it got worse (first my bum right leg, but now my left upper body and back) all he does is pump it up and add more Neurontin too. I was still in horroble pain.

I went to the pain specialist who first added Percocet (10/325 4Xday) and he'e helping more than anyone! He wanted to install the Baclofen pump but my insurance company denied it (3 times).

This week I explained that I have never been on any other muscle relaxer. He was astounded. He gave me an rx to try Flexeril (of all the old time meds) and I feel so much better! I hope it lasts but I dont remember Baclofen ever making me feel this relaxed. Plus, I'm not in the awful fog from taking 80 mgs of Baclofen every single day. For some reason Flexeril wakes me up....!

Just my .02 cents!
kcmom

yes, Debbie, MMJ helps me a lot, but I worry about getting sent to Hattieville, rated one of the WORST prisons in Central America...

so, pot off the street is out of the question for me... and the unknowns regarding dosage also concern me.

so, my solution is to make marijuana butter, and then cook brownies with it.

I figure out the dosage myself, by experimentation, as it's not like medicine bought at the pharmacy, and getting uniform results without getting stoned off my kiester is my AIM.

because MJ can be different every time.

I try just a one-inch square of the medical brownies, to see the results, and wait a few hours (remember the absorption when eating is MUCH slower than smoking!)

the reason the butter works, is that it's distributed *evenly* throughout the brownies, so the results are the same each time...

http://cannabis.com/faqs/cannabis_re...ipe/index.html

also, this way, there's no visible *pot* around the house, and no suspicious odors of smoke lingering in the air.

I *HAVE* to do this, since MS is unknown in the tropics, Baclofen is not available... (that's about the ONLY thing it's used for) and I am still waiting for my GP to get approval to import a batch of Baclofen for me.

:grouphug::hug::grouphug:

hang in there, Debbie!

Jim takes 30 mgs three times a day with 30 mgs for break thru pain if needed. We also stretch him daily to keep the muscles loose. I use a massage cream called Spring Chicken that we get at our local garden. You can buy it online too. He also take Tizanidine 4mgs three times a day and valium, 5 mgs two times a day and 10mgs at night. It doesn't give total relief but it's better than nothing. He has extra valium for break thru pain as well. It sounds like a lot and is but Jim can't get up and walk so the meds have to be taken to avoid constriction. We tried other meds like sinemet and marinol but it was too hard on his tummy.

Hope you get relief soon.:hug:

I took 30 mg. this morning because the pain came back in my right hand (feels like a vice) and right leg. Right now....I'm a little tipsy so I'm not sure I could take this amount all the time. Maybe after a while you get used to it. The pain isn't all the time, though. It might be gone tomorrow and not come back for days. I just never know. I think I might make an appointment with the Neuro for one last visit before the end of the year (I lose insurance coverage after 12/31) and to see if there might be something else I can take in addition to or instead of the Baclofen.

Do any of you notice the spasticity is worse when the humidity is high?
I take 5mg of Baclofen @ bedtime and occasionally 5 mg during the day as needed. I'm worried about feeling weak from it as I have that symptom normally anyhow and don't want to make it any worse.

Kelly, Do you notice increased spasticity since you started LDN?

Yes, humidity has a lot to do with whether or not I will have spasticity. And it's been very humid here lately....raining almost every day. I fully believe that's what's making mine act up.

I did notice an increase in spasticity when I started LDN but it went away within a week. Just since the weather has been so rainy it's started up again.

I'm hoping that this week it will calm down a bit since it's turning colder and dry.

Kelly, I think you are right about the humidity. Mine tends to be worse during humid times as well as weather extremes (hot/cold). It's been cold where you are too and that may be making it worse for you.

Hang in there.:hug:

Seems I too have heard something about mj and helping spasms. :cool: :D

Fear not DebbieD, Illinois has the medical mj law in their hands and putting it on the table. We should hear something soon, maybe by February? They are putting together a pilot program for starters. Michigan approved it this election so we should be right behind them. It's already been approved to vote on in the Senate. Wisconsin is also waving the flag for medical mj.

Here's a website with good info on medical mj and various states who have approved it and those in the process. Jim and I are members and look to this site for current information.

The National Organization for the Reform of Marijuana Laws "NORML"

Here is a short description of how they feel about medical marijuana:

Critics of the medical use of marijuana say (1) there are traditional medications to help patients and marijuana is not needed; and, (2) permitting the medical use of marijuana sends the wrong message to kids. How do you respond to these concerns?

For many patients, traditional medications do work and they do not require or desire medical marijuana. However, for a significant number of serious ill patients, including patients suffering from AIDS, cancer, multiple sclerosis and chronic pain among others, traditional medications do not provide symptomatic relief as effectively as medicinal cannabis. These patients must not be branded as criminals or forced to suffer needlessly in pain.

Dronabinol (trade name Marinol) is a legal, synthetic THC alternative to cannabis. Nevertheless, many patients claim they find minimal relief from it, particularly when compared to inhaled marijuana. The active ingredient in Marinol, delta-9-tetrahydrocannabinol, is only one of the compounds isolated in marijuana that appears to be medically beneficial to patients. Other compounds such as cannabidiol (CBD), an anti-convulsant, and cannabichromine (CBC), an anti-inflammatory, are unavailable in Marinol, and patients only have access to their therapeutic properties by using cannabis.

Patients prescribed Marinol frequently complain of its high psychoactivity. This is because patients consume the drug orally. Once swallowed, Marinol passes through the liver, where a significant proportion is converted into other chemicals. One of these, the 11-hydroxy metabolite, is four to five times more potent than THC and greatly increases the likelihood of a patient experiencing an adverse psychological reaction. In contrast, inhaled marijuana doesn't cause significant levels of the 11-hydroxy metabolite to appear in the blood.

Marinol's oral administration also delays the drug from taking peak effect until two to fours hours after dosing. A 1999 report by the US Institute of Medicine (IOM) concluded: "It is well recognized that Marinol's oral route of administration hampers its effectiveness because of slow absorption and patients' desire for more control over dosing. ... In contrast, inhaled marijuana is rapidly absorbed." In a series of US state studies in the 1980s, cancer patients given a choice between using inhaled marijuana and oral THC overwhelmingly chose cannabis.

As to the message we are sending to kids, NORML hopes the message we are sending is that we would not deny any effective medication to the seriously ill and dying. We routinely permit cancer patients to self- administer morphine in cancer wards all across the country; we allow physicians to prescribe amphetamines for weight loss and to use cocaine in nose and throat operations. Each of these drugs can be abused on the street, yet no one is suggesting we are sending the wrong message to kids by permitting their medical use.

ahhhhhh, that's a well-written and very informative piece Sandy, thanks for posting it!

it's the best explanation I've seen for why orally-administered MARINOL doesn't work.

for me, the oral administration of MJ, (via brownies, with all natural cannabinoids intact), it *IS* the slowness of absorption I want... for overnight usage, and control of severe spasticity.

I really don't want to feel "stoned" all the time, but I just HATE to wake up with my legs in deep spasm.

like Kitty, I only have intermittent spasticity (of the LARGE kind), so my aim is to not wake up frantically clutching my foot or leg, and yelping for God to have mercy.

the minor muscle tightness I can deal with, using careful, gentle stretches, and self-massage... without medication...

when I hold still for a while, or nap, or sleep at night, I tighten up a lot, but it's manageable, and it's not DIRE AGONY, like the major spasticity I experience, often during sleep.

Spasticity is a condition in which a muscle has increased tone and resists being stretched. Although the details of how muscles become spastic are still not completely understood, stretch reflexes are known to be involved. When a muscle is stretched (e.g., when the opposite muscle contracts), specialized receptors in the muscle tendons report the amount of stretch to the nervous system. In turn, the nervous system tells the stretched-out muscle to start contracting. In some neurologic disorders, including cerebral palsy and MS, stretch reflexes can become hypersensitive and initiate muscle contractions inappropriately. The affected muscles feel tight or stiff and are prone to painful spasms.

Normally, nerve signals from the brain and upper spinal cord help control the stretch reflexes, inhibiting them when necessary, to allow appropriate muscle contraction. In MS, lesions in the nervous system interrupt nerve signals, and it is thought that MS-related spasticity probably arises when the lesions block these inhibitory signals from the brain. Spasticity affects up to 60% of people with MS, and adds to existing problems with mobility and muscle weakness.

http://www.mult-sclerosis.org/news/A...icityInMS.html

MJ when orally administered is also helpful with my... um, what's the word, clonus? well, I was close, it's MYOCLONUS:

http://www.mult-sclerosis.org/myoclonus.html

hugs and love to all of you experiencing spasticity (be it major or minor)

Thanks for all the informative articles. Kay, the one on myoclonus was interesting to me 'cos I've had the hiccups quite frequently the past couple of weeks. Just since the spasticity has gotten worse. I'm wondering if this is also MS induced? I have the myoclonic jerking a lot at night....especially once I fall asleep. Once I am asleep I'll usually wake myself up with my arm or leg jerking. Tricia and I were talking about this the other day...wondering if it has anything to do with the body relaxing enough to not be able to stop the movement.

I've been hiccuping a BUNCH lately too... I guessed it might possibly be due to inappropriate neural signals in the throat area...

still hoping for a Baclofen delivery here in the jungle, waiting somewhat anxiously for word from my doc that's he's received either the approval, or the shipment.

Last Thursday, my PCP upped my dose again. I had gone to him because of an intense pain I was getting at night in bed that was relieved only by me getting up and walking around for awhile.

No matter how I laid in bed or shifted position, the pain came and wouldn't go away until I got on my feet. He told me it was muscle spasm, and that we needed to increase my Baclofen.

I'm now taking 20 mg three times a day, and it appears to be working. He also said it may help a little with my tremors.

Kelly - I asked about this yesterday at the neuros. We were right about the conscience helping out with the jerking but in a sleep state it is totally different. She did say that some of my "jerking" and spasticity like that can be due to fatigue and overdoing it.

Also, she mentioned that with the cooler temps at night and adding blankets on the bed the weight of them could be triggering and/or adding to the nocturnal myoclonus activity. Time to reevaluate my blankets. LOL

I need to learn to pace myself.:confused: I seriously don't know how.:eek::confused::confused:

Me, either, Trisha. On the days I have extra energy and feel like doing things....I do them! I just try not to worry about the after-effects. I just try to enjoy what I can while I can. :rolleyes:

Me too! And then when the after-effects hit, I kick myself for doing too much. LOL One day of being "on" can mean 2 to 3 days of being "off" and in fatigueland on the couch. UGH! It happens to me all the time. You would think I would learn but NO. Guess I just blow the Pavlov (sp??) dog theory to he!!. LOL