Gotta new drug: Baclofen

[ActiveMSers]

In recent months my spasticity has been going bonkers, especially with my right leg. Now I just found out it might not be all spasticity (more on that later), but something had to be done beyond my daily stretching, so enter baclofen.

Other than a DMT (currently on Ocrevus) I take very few meds or supplements. Vitamin D (daily), Ambien (as needed) and Viagra (as needed). Fiber chews and stool softeners enter the picture on occasion.

But with my right leg not cooperating, not straightening, and getting stiffer, my neuro said it was time to try baclofen, the muscle relaxer. I started at 10mg 3x a day, which helped some. Tried 20mg, but that made me loopy. So now I'm somewhere around 10-12 during the day, and a slightly higher dose at night. It helps, but only so much.

Do folks have baclofen experiences, advice? I know it's a common MS med....

[Suebee]

Dave, so sorry spasticity is in your life. I hate this symptom! I think it really qualifies as another type of pain sensation. You gotta try everything and see what works, what dose, what timing etc. I hope it does.

But that said, I did not like baclofen. I found that a dosage that kind of relieved my spasticity made me both loopy AND feeling like Gumby. Not to mention, I thought it caused a sort of rebound effect after my dose wore off. And please, do a lot of research before considering a pump. The pump allegedly gives more consistent dosing etc. But I think it's a last resort, last ditch effort for relief and I'm not sure it delivers it. A couple years ago I read a blog by a man with MS who had a lot of spasticity pain and he diaried his path to getting the pump. It was so heart-wrenching. (I tried to find his diary link but I couldn't locate it on internet.) Please post what dose and timing helps you. I've toyed with idea to get acupuncture... but cost has kept it in the idea stage...

[Grady]

Baclofen

I have been taking baclofen at night to assist with sleep. My neuro says all my walking problems are spasticity related and she recommended a pump about 5 years ago. My wife is a nurse and disability case manager and she has seen too many pain pump failures to feel good about me pursuing that option. Not sure the baclofen really helps. I still do my daily stretching since I think that provides more benefit. I tried taking baclofen throughout the day but my employer preferred that I be awake during my working hours!

[ActiveMSers]

Thanks Suebee and Grady. Still tweaking the dosing. Here's a study on the pump. It's not something I'm considering at the moment, but I have heard from others that it is helpful. I'll keep up with oral dosing and stretching for now....

http://journals.sagepub.com/doi/full...52458510395056

[penkalet]

Hello Dave, timely question for me because I have been on baclofen for 4 years 20 mg Twice a day specially to help at night. Since Ocrevus my spaticity I think is better and I have try twice in few months to cut the dose in half just to see If I still need it and yes I can tell the difference, big time so I am staying with it. I really have no side effect and I will say that it take a week to feel the full effect. The max dose is 80 mg a day.
I also take 4 Aminopyridine (generic for Ampyra )10 mg twice a day that really help me also . We are all different so we have to try and see. Good luck.

[DougR20]

Hi Dave,

First of all thank you for this website. I just joined today. Regarding my experience with Baclofen, I found the 10mg dose (2x/day) reduced spasticity, but like Suebee’s post it made my legs feel quite weak. Therefore, I had to stop taking it.

Since I am new to the site, I don’t know how much discussion has taken place on CBD Oil.

I have been taking it for about a month. It reduces pain, muscle stiffness, spasticity and helps me sleep.

I am taking one 15mg capsule 2-3x/day.

I hope you find the best solution for your spasticity.

[wifey]

Hi Dave,

My husband has had MS for 20+ yrs. Started having tingling/numbness issues with his right leg around 8 yrs ago, which later developed into major pain in his right leg and then spasticity issues in both legs, especially at night.

He had a baclofen pump put in last Nov as he reached the max baclofen dosage at night, also had a spinal cord stimulator put in the year before.

Definitely a couple gambles that paid off for him in a major way. He's able to run a bit now, do yardwork (with help from one of the cooling vests you recommended!), etc~ between the stimulator and the pump. Seems like different surgeons may have different success rates too?

He is not into forums but I found your site while looking for a cooling vest (thanks for the helpful reviews!) and figured I'd share his experience.

[Laineyg]

Baclofen

Hello Dave,

My Baclofen experience was bad, high as a kite and only semi helpful for spasticity. CBD oil during the day and a 50/50 CBD/THC oil for sleep. This does wonders for my severe spasticity and curbs but does not take away my pain. Besides vitamin D supplementation I can’t get by without magnesium, probiotic, zinc and chamomile. These help with the digestive side as well as spasticity. Hydration and even blood sugar have a big impact too. This is just my experience. I hope you find some relief!
Elaine

[Guitar_grrrl]

Hi, Dave,

I've been taking Baclofen for the past 9 years, and I'm now up to 20 mg, 4x/day! I don't have the kind of spasticity that slows my limbs, but more of the hyper-reflexia short-circuiting spasms, in all muscle groups, day and night. Think Charlie horse on steroids! Sometimes I have full body spasms! Not a picnic, to be sure. The only side effect I deal with is increased fatigue and brain fog, like I need more of that!

So after three years on max dose, neuro and I had a long talk, and came to the conclusion of an ITB pump. I know it sounds drastic, but the few folks I know who have one wonder why they waited so long, lol. He said, "no sense beating our heads against the wall any more". I couldn't agree more.

Of course, YMMV. Good luck, and I hope Baclofen helps you.

[LindaLa]

Hi Dave,
I used Baclofen last year for a couple of months for spasms that would start in my left hand, work up my arm, then down my left side and up into my neck. A couple of times this spasm attacked while I was driving. Luckily I was on a back road and could pull over. Baclofen worked to stop these spasms, but I do remember that I disliked immensely the mental effects of the drug and halved my dose with a pill cutter. So far, this year I have not experienced any more of these spasms.
My left leg is weaker than my right and I use a walking stick for balance and stability. I don't know if spasticity is the problem there. I am also unclear about the definition of "spasticity" versus "spasm". Perhaps there is a better drug for spasticity than Baclofen. I hear a lot about CBD but I question all things drug related. I wish you well. Thank you for this blog and giving us a connection with others in the MS boat. Warmly, Linda L.

[Rosie]

Baclofen

Hi Dave - I've used Baclofen for the last couple of years, and have had no problem with it. I use a very small dose 5-10mg at night as needed for craps and spasms in my goofy leg, and stiffness in my back. I have used as high as 20mg when really flared up (I've had 2 episodes) following episodes of severe cold /flu. My nuero. said I could go as high as 90mg in a day if it were severe.....lets hope it never gets that bad! I hope you adjust to it!

[ActiveMSers]

Wow, this input is incredible. And timely. Thanks Rosie, Linda, Laney, Wifey, GG, Doug and Alain. I really appreciate it. The fatigue and fog haven't been too bad, but since I usually have almost zero, it's definitely been noticeable. Fortunately it helps.

Spasticity is rather sucky! And it's definitely sucky if I don't stretch and take my Baclofen.

[ActiveMSers]

Wanted to post an update on my Baclofen experience. I'm now taking 20mg every 8 hours or so (it effectively lasts about 6 hours). Definitely helps. I could add another pill if necessary, but as previously mentioned, 80mg is generally considered the max per day without going to a pump.

Fortunately the fatigue and loopiness caused by the drug have mostly gone away and crop up only rarely. I'll stick with this plan for the time being, especially as it has tamped down significantly the dreaded leg lock.

[girl1dir]

Wanted to post an update on my Baclofen experience. I'm now taking 20mg every 8 hours or so (it effectively lasts about 6 hours).

Interestingly I found that 30mg 3 times a day is my sweet spot, but I upped it too quickly and had some icky side effects (numb tongue!!??!!). I'm back down to 10mg 3x daily until I can figure out this tongue -- oddball side effect or an oddball relapse? No one knows.