Baclofen

[Neworleanslady]

Is anyone taking baclofen? Is it helping? Do you have any side effects?

[Boxofchocolates]

Yes, every evening. It helps a lot with the pain I get from muscle spasms.

No negative side effects for me, thankfully.

[starlight5]

Baclofen did not help me with spasticity or pain. I was up to 80 mg a day at one point. I fell twice at that dose as I was a zombie. I hope it works better for you.

[Sweetheartonvdayl in reply to starlight5]

That stinks!!

[Tazmanian]

I take 80mg a day and it is helping me with spasticity I have no side effects

[Tazmanian in reply to Tazmanian]

The 80 mg is 20mg 4 times a day

[Sweetheartonvdayl in reply to Tazmanian]

I

[bxrmom]

I take 10mg 5 times a day. I used to take 20mg 3 times a day and was wearing off before the next dose was due. My new Neuro didn't feel comfortable increasing the dose so he lowered the dose and spread it out through the day. It works for me....I had my doubts when my Neuro suggested it. I don't have any side effects from it.

[Neworleanslady]

Thank for your responses. My doc prescribed 10 mg 3x per day. I don’t have a problem sleeping at night so I only take it when i wake up and once more during the day. I’ve started taking only 1/2 pill to start, because i dont want any negative side effects like dizziness or constipation.

[kdali in reply to Neworleanslady]

I’m about to join you, ty for posting this question!

[kwhompus]

side effects for me include drowsiness and noodle legs if I take to much. I only take it at night when I go to bed because it takes care of my twitching legs and other small problems. Something to be aware of, is when you stop taking it it can effect your heart somehow, but I would ask the doc about that.

[Neworleanslady in reply to kwhompus]

Thank you

[Gcantrell7]

Yes. I can't function without it.

[cindyrn68]

I take baclofen twice daily. I'm supposed to take it 3 times/day but I just can't remember to take the midday dose at work. It really helps with the spasticity and pain. I don't have any side effects.

[Tazmanian in reply to cindyrn68]

Try taking it at lunch time

[KarenUSA]

I’ve had a Baclofen pump for several years. Works great for spasticity and I’ve avoided the side effects because it goes into the spinal fluid and not the blood stream.

[mcheri]

My husband takes 5 a day and it definitely helps. He is at his limit I think next step is a pump but he has had no side effects and has been taking them a long time. Good luck. I see that they do work.

[Neworleanslady]

Thanks y’all

[palomino27]

It did help me a little but the side effect of crushing fatigue was to much for me. Never got over 20mg. Zanaflex was even worse fatigue.Also tried the baclofen pump trial. My doctor said the small benefit during the trial didn't even come close to justifying the pump.

[CrazyCatWom]

I take baclofen for the cramping of the muscles on the TOP of my right foot. The only side effect I expierience is sleepyness.

[zenhead]

I used oral baclofen, but in order for it to be even slightly useful I had to take a huge dose, which got up into my head, leaving me groggy and almost halucinating. I now have an implanted pump, which takes the edge off but I am still plagued with sleep-ending spasm/cramps. My neuro says that I can increase the dose which might take care of that, but will likely leave me with so little tone in my legs that I'll be unable to transfer. I'm at the "nothing to be done" place.

[Neworleanslady in reply to zenhead]

Uggghh. Prayers to you.

[Rubybegonia in reply to zenhead]

Hi, I have baclofen pump also, for about 6 years. My calves spasm. I have the doctor increase the amount very slightly (like 2%) when the spasms start again. It such a tiny amount that it doesn't affect my ability to transfer but it does seem to take care of the spasms .... until it doesn't and then I go back to the pump doctor. Good luck

[Neworleanslady]

It’s difficult to tell if the sleepiness is from the ms or the med. i guess both. But aren’t the side effects supposed to lessen or even go away over time as your body get used to the med?

[nes78]

it did nothing for me but i do hope it works for you! it really does help some people.

[TDonahue58]

Unfortunately, the jury is still out whether it's helping me or not...

[bpriddle]

I take 80 mg a day. 30 am. 20 late afternoon and another 30 around 11. For muscle spasms in back.

[Neworleanslady]

I think it’s helping me with spasticity when I’m walking in that my legs move more smoothly, but I’m walking very off-balance it seems

[Sandydemop in reply to Neworleanslady]

are you using a walker or a cane when you're off balance?

[Neworleanslady in reply to Sandydemop]

No I’m holding off as long as possible for that. But i have been eyeing up a cane with forearm supports

[Sandydemop in reply to Neworleanslady]

Just be careful. If you need something to help you walk, it's better than falling down.

[Neworleanslady in reply to Sandydemop]

I havent told people i have ms yet so using a cane would be a huge step dor me

[Neworleanslady in reply to Neworleanslady]

For

[Sandydemop in reply to Neworleanslady]

it's a big step. I wonder if there are other ways to work on balance without a cane.

[Neworleanslady in reply to Sandydemop]

I see Trevor Wicken has sent something about balance. It’s not usually enough though. Actually it’s probably that i dont do it enough (exercise, that is)

[Sandydemop in reply to Neworleanslady]

good. I like the MS gym very much. trevor gets it.

[Carleen]

I take 20 mg three times a day & it helps, no side effects.

[Carleen]

Yes, 20mg three times a day it helps & no side effects.

[eharoot]

I take 70-80 daily. definitely helps pain of spasms up and down my left side

[Neworleanslady in reply to eharoot]

Did you build up to that dosage? Did you start at 10 mg?

[eharoot in reply to Neworleanslady]

yes. over a period of at least 25 years

[cljones]

I have been taking it for several years. It does help and I haven't had any side effects. I take 10mg 3,times a day. At first it made me a little tired but it got better pretty fast.

[Neworleanslady in reply to cljones]

Thanks that’s promising

[Ontheroadagain4now]

I tried oral Baclofen several years ago but discontinued it when there was no improvement in my spasticity. After Baclofen I tried Botox injections which helped for a few years. When the Botox was no longer reducing my spasticity my Dr. suggested I consider a Baclofen pump. The neurologist I met with said I would be a good candidate and scheduled a test to see if it was going to work and my system would tolerate it. Everything went fine with the trial and the pump was implanted. It took several visits to my neurologist to find the correct dosage. That was three years ago. The battery will last for five years.

Before the pump I had severe spasticity and drop foot. The Baclofen pump really helped with both problems. My pump needs to be refilled every six months. I know it’s time for the refill because my leg will start to spasm and the drop foot returns.

I also started the Ocrevus infusions when they became available. Both the pump and the infusion work well together and I have not experienced any problems. The Baclofen, Ocrevus, therapy and walker all keep me moving!

[Neworleanslady in reply to Ontheroadagain4now]

Thank you for your explanation! I had my 1st Ocrevus infusion a little over a month ago and just started the oral baclofen this week. So i hope this combo works for me like it’s working for you. I also take ampyra/dalfampridine which works very well for me

[Sandydemop in reply to Neworleanslady]

i would be lost without Ampyra

[Tulip77]

I have been on cyclobenzaprine for 10 years for fibromyalgia. After MS dx, neuro said Baclofen was better. I took it three nights in a row and slept maybe 4 hours total. I went back to cyclobenzaprine.

[Neworleanslady in reply to Tulip77]

Is that to help with spasticity?

[Tulip77 in reply to Neworleanslady]

It is a muscle relaxer. I take it every night. I think it just depends on what works for you.

[Iona60]

I used 40 mg of baclofen for several years for spasticity. Unfortunately, I began to have trouble swallowing at night and had to stop. It is a listed side effect, but it took some time before it developed. Hope that it helps you.

[Neworleanslady]

Whaat? A side effect of baclofen is trouble swallowing?

[gbheber in reply to Neworleanslady]

Hi! I’m also a New Orleans lady but I’m living in Palm Beach. I noticed your post on Baclofen. I’ve been taking Baclofen for 8 years now and it still works great for my spasticity and it also helps me sleep. I take 30mg at nighttime, if legs are restless and twitching I increase to 40mg. I travel from Palm Beach once a year to visit my Neurologist in New Orleans because she is the best and she believes in Baclofen. Never heard of Baclofen causing problems with swallowing, however MS can cause swallowing problems. #whodat

[Neworleanslady]

Where y’at? I wonder if we see the same doc! Who dat!!

[rgdickson10]

I took it briefly just recently... Nope, no help. Just one more medication in a long line of them. 😞

[Sandydemop]

My sister has a pump and when it gets close to refill time she feels the stiffness come back. Then they either tweak the dose or refill sooner. It's a small surgical procedure.

[kycmary]

I take 10 mg tabs 3 times a day with 1 floater I take when needed, it really helps with spasticity & pain from muscle spasms I have never had any side effects been taking it for several years now.

[Neworleanslady]

Floater just means one to take prn?

[Neworleanslady]

does anyone feel weaker from taking baclofen?

[JTZES]

It did nothing for me over a 3 month period. I had no side effects.

[rjoneslaw]

i take it 3x's a day no side effects

[kdali]

I don’t know if I replied already, but I find it very helpful but it causes insomnia so I only use it before noon.