Old 02-13-2019, 10:38 PM #1 (permalink)
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Default Weakness

My husband has bulbar ALS .The DR has upped his dosage of Baclofen to 5 times a day.He is considerably weaker taking after taking them.Anyone else .Thank you .
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Old 02-14-2019, 12:25 AM #2 (permalink)
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Default Re: Weakness

How much is each dosage 5 times a day?

PS. This is highly unusual taking Baclofen 5 times a day. The mechanics of Baclofen is
taking it 3 times a day (every 8 hours) morning, mid-day and before bed.
It is never (maybe seldom) prescribed to take "as needed" for ALS. As you may know,
once on the regiment of 3 times a day (5 times a day) you can not just stop taking it.

Taking it 5 times a day would require taking throughout the night hours (having to
wake up).

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Old 02-14-2019, 02:08 AM #3 (permalink)
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Default Re: Weakness

Baclofen can certainly cause or worsen weakness, and, like Al, I have never heard of a five times daily regimen and since it's not the safest drug there ever was, and more frequent oral dosing could increase its side effects/long-term toxicity, that would not be something I would personally consider.

Sometimes a pump is implanted, but that is a completely different way of dosing the drug.

How bad is the spasticity or pain that he is getting baclofen for? Has he tried tizanidine?

Is your husband getting this advice at an ALS clinic?

Best,
Laurie
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Old 02-14-2019, 12:06 PM #4 (permalink)
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Default Re: Weakness

It’s ironic this subject came up. I recently went to ALS clinic and we
discussed Baclofen.

Bacolfen will suppress fasciculation. If you truly have spasticity from
a MND, cramps and Charlie Horses Bacolfen will not induce many
side effects. If it mis-prescribed side effects will be more present.

Like opiates, if you are truly in pain from surgery or whatever and
take closely as prescribed your chances of addiction are considerably
lower.

Those who take high dosages like I do must follow the regiment very
closely. I am fortunate for the high dosage I take I do not have side
effects.

Not saying some may have side effects but there are alternatives to
Baclofen.

For what I know. Maybe some of the more knowledgeable members
may chime in.

Last edited by Clearwater AL : 02-14-2019 at 12:47 PM
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Old 02-14-2019, 07:48 PM #5 (permalink)
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Default Re: Weakness

What are the alternatives to Baclofen?
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Old 02-14-2019, 08:21 PM #6 (permalink)
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Default Re: Weakness

Tizanidine (with caffeine interaction a consideration; can be used with baclofen)

Botox if oral meds don't work or have intolerable side effects

Low-dose benzodiazepines (sedating)
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Old 02-14-2019, 09:20 PM #7 (permalink)
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Default Re: Weakness

Yes , at the VA .They said it would help him from biting the inside of mouth .He mouth was bleeding daily .He was able to walk at the time . Now he is much weaker .
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Old 02-14-2019, 09:22 PM #8 (permalink)
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Default Re: Weakness

His was taken for biting the inside of his mouth.
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Old 02-14-2019, 09:24 PM #9 (permalink)
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Default Re: Weakness

He was taking 2 in the morning , one in the afternoon , 2 at night .Everything he takes is through a feeding tube.Thank you
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Old 02-14-2019, 09:26 PM #10 (permalink)
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Default Re: Weakness

Thank you all for replying .
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