Thoughts on Baclofen

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TippiLeigh

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When I was first diagnosed with PLS a couple of months ago, my doctor started me on Baclofen 10mg, 3x a day. The first few days I thought it was a miracle drug. My spasticity and spasms calmed way down and I could walk better. But before long, it’s effectiveness started wearing off. Next appointment, I told my doctor about it so he doubled the dose. I don’t feel that it’s gotten any better on this higher dose and as a matter of fact, I feel weaker. My main weakness is left side, starting with foot (which I can no longer really move) and has gradually moved up that side of the body. I have my first appointment this week with my second opinion and I wanted to talk to them about it, but I’d also like some real world experiences too. I don’t know if it’s even worth taking anymore if it’s just making me feel weaker. Are there alternatives that are better? I hate walking like the tin man, but I also like still being able to walk for as long as possible. I furniture/wall walk around the house, but use a rollator if it’s a significant distance.
 

Nikki J

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First use the rollator don’t risk the wall walk thing.
second it is not unusual that treating spasticity reveals underlying weakness. It isn’t really the baclofen making you weak. It is that spasticity can mask weakness.

you should of course check with your doctor but you should probably consider tapering. My sister only took baclofen at bedtime until she was in a chair full time. She had ALS though
 

bhg

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At my first ALS Association meeting four years ago a guy spoke up warning people about Baclofen, that it made him extremely weak. The moderator cautioned that it was just his experience. I didn’t continue going to that meeting but I clearly remember him. Thought I’d mention it.
 

Clearwater AL

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You can take Baclofen 30 mgs three times a day (90mgs) BUT... it must be at
precise timed intervals. This is a must if done properly. Baclofen was (is) not
a med to be taken "as needed" or just at bedtime. It don't work that way.
Bacolfen works to minimize spasticity.... the intern that makes one relieved
of that but then a sense of perceived weakness. One for the other.

When the 30 mgs 3 times a day looses affect they can go to a Baclofen
pump which many found better desired effect.

And, Baclofen is not a drug you can just stop taking, it can cause convulsions.
Randomly reducing dosage up or down can also have side effects mostly
defeating it's purpose.

Please have a conversation with your Neurologist.

To others on what I wrote... have at it. :)
 
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Cony

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My husband Was prescribed Baclofen at night because of his exagerated spasms that occurred every night would not let him sleep. It was prescribed originally at 10 with the possibility of increasing as we considered but noticed that 15 was what worked better, along side of cvd/thc. Baclofen is for spasms and it works but it won’t solve weakness. <link not allowed by TOS removed>
 
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Clearwater AL

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I guess it's what Neurologist you counsel with... their opinions are all over
the map from progression, to meds, to protocol.

<link removed>

We're left to following what our Neurologists tell us regardless to their
qualifications and or opinions.

Follow the Neurologist you are seeing. He/she is your doctor.
 
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old dog

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I take 10 mg of baclofen morning and evening. I also take 2 mg of tizanidine at bedtime. If I'm having a bad spasticity attack, I sometimes take two baclofen. The baclofen helps more with spasticity, and the tizanidine relieves cramps. This works for me but all cases are different.
 

Firefighter58

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I have taken baclofen for years now and I agree with Clearwater Al.
Al
 
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