Baclofen - your experiences

Baclofen gets me mildly stoned. 10mg, every three hours.

4-Aminopyridine is, in my opinion, the only spasticity medication worth taking.

I have taken Baclofen since 1997 with no real side effects. My neurologists let's me decide the amount each day because every day is different for me.

When the spasticity is low, I take 10 mg in the morning and 20mg at bed time.

On cold days or when I have not exercised, the spasticity can get high. I then switch to 20mg in the morning, 20mg at noon, and 30mg at bed time.

The key with any of the beneficial medication is to start with the lowest doses and work your way up. Since many of the medications can have a temporary sedating effect, give all new medicines the time for your body to adjust.

I also have a flexible dosing for Gabapentin.

Hi Aaron,

When I was first diagnosed just over 6 years ago I tried it and went up to the full dose but it did nothing for me just made me drowsy so I stopped taking it, the only thing I take now is Vitamin D3 but we are all different so it would be worth a trial? You'll have to taper off it to stop though. I recommend using a elliptical trainer!

All the best

Steve

Never did anything for me

Hi! I am a female with AMN but have tried baclofen and found that I had a bad reaction to it (but I am ultrasentisitve to any meds). I don't want to turn anyone off trying it as it is definitely worth a try but just to mention...I noticed I had some issues breathing. Not terrible but had to "think" about taking each breath...not sure if it affected my diaphragm muscles or if it was just some anxiety but I only ever took 2 doses with the same result.

I recently (3 months ago) started a regimen of stretching and warm ups and then more dynamic stretching and exercise drills that I do throughout the day....every day. If I miss a day (like yesterday), I pay for it with more stiffness and pain and fatigue. It is very time consuming (hours each day) but has become my "job" so I can be active with my family so for me it is worth it. I feel better in the last 3 months since starting it than I have in 2 years.

Good luck and anything is worth a try!!!

Hi I tried Baclofen but it just made me very tired. Have been on Gabapentin now for nearly two years and it has helped me. Everyone is different and like the others worth trying as everyone different. Again I have an exercise regime that helps with stiffness, even if watching tv just stretching exercises on legs helps.

Good luck to you hope it helps, Sue

I took 10 mg. of Baclofen for a short time (about 3 months). I had to stop it as I would, literally, pass-out about 30 minutes after taking it. This side-effect seemed to build-up in intensity for me. Unfortunately, I was on vacation when this side-effect started!

So many have benefitted from this med that I can't balk at it for someone else. I share so that you are aware of this happening for me.

Good luck!

Aaron,

I am with you on wanting to find a drug free way to deal with stiffness/pain/spasticity. Unfortunately, I have thus far been unsuccessful. I used to just deal with my pain/stiffness. However, lately spasticity has started causing me many problems. As I have written elsewhere ad nauseam my legs are very spastic at night (I do not have real problems during the day) and when I wake up my legs are bent in an awkward position. This leaves my legs feeling like I pulled something, and I am unable to bear weight on one or both of my legs. Without this problem I can stand a little and hobble around holding on to things. With the problem I have trouble just putting my pants on. I have an appointment with an MS doctor in a month. I know that he is just going to prescribe drugs because when I complained of pain he prescribed neurontin, which left my legs weak and my head feeling light. Maybe I need to try a massage. I have tried stretching, but it has not made a difference. Riding my motor powered peddler seems to help some because (I think) at least my legs are moving. Good luck in the never ending journey/fight.

Chris Phillips

Aaron, I was diagnosed in 2011 and began taking baclofen early 2012. It was recommended by my physical therapist for the increasing spasticity. That first 10 mg knocked me out into a deep sleep one Saturday afternoon! I knew then that my dosages would be no more than 5 mg and spaced far apart enough so that I wouldn't feel the drowsiness. Five mg every 3 hours seemed to work. My daily dosage was 25mg. In 2014, I visited Kennedy Krieger Institute. The physical therapist there suggested I take 7.5 mg 3 times per day, so as to decrease the amount of effort needed to remember to take the dosages! I did switch to 7.5 mg but only taking it twice per day and I was MUCH less foggy in the head. Not that I felt foggy before, but things were clearer after. This meant my daily dosage went down to 15 mg. In the meantime, I've kept up my exercise regimen and stretch daily. In the last year, my daily dosage went down to 10 mg, 5 mg in the morning and 5 mg in the mid to late afternoon. Every now and then I do add 5mg if I know I'll be home much later than 9:30 at night. Even though I do not take any specifically for night when sleeping, I can say that if I skip my afternoon dosage, pain and spasticity will wake me from my sleep.

This is the only medication I am taking right now. I am also one of those people who don't like taking medication, but now it has become a necessity, along with increased exercise. I would also like to try 4-Aminopyridine, amongst others.

Baclofen does not work for everyone, as some have mentioned. It is worth finding out if it works for you.

Has anyone here had a Baclofen pump fitted?

I'd certainly give it a go. Keep meaning to ask my neurologist.

I only use Baclofen in the evening with Gabapentin (300 mg for neuropathic pain) to stop the spasms or foot jerk which prevents sleep. I don't take it for the spasticity during the day or night. I stretch before getting out of bed (20 minutes) in the morning and stretch often during the day and an additional 30 minutes when at the gym. These medications make me drowsy and with existing fatigue, they are not suitable during the day. However, I like the idea of the smaller dosage but I'm afraid that I built up too much resistance for that. My daily dose begins at 50 mg and if I'm having a bad night, up to 70 mg.

I took Baclofen a few years ago, up to 20-30 mg/day. Had to build up to that due to reactions as others have talked about. Didn't help. My docs suggested baclofen pump, which may end up being an option for you. Here's why - baclofen in pill form gets diluted in system and often ends up causing more side effects than directly attacking spasticity. The baclofen pump sends the meds directly where needed (don't ask me exact science, but I think the spine area), so more effective. The threshold question, however, is whether baclofen helps you. Even though it didn't help me, my docs said it's b/c it was being diluted b/c in pill form. There is a baclofen experiment that can be done to see if a pump might be worthwhile installing. However, the experiment, like the pills, failed to help me. So, hobble along I continue to go.

There are some compounding pharmacies that supply Baclofen in cream form. I can't find any proof that it is an effective delivery mechanism for spasticity, but i've seen reports that it works for pain and certain types of neuropathy. Anything that bypasses the brain has to be good.

Gabapentin is sometimes applied topically as well.

I have plenty of Baclofen. I keep meaning to make up some cream of my own, just to see if it works.