Weakness

[I need answers]

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 .

 

[Clearwater AL]

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).

 

[lgelb]

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

 

[Clearwater AL]

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.

 

[dldugan]

What are the alternatives to Baclofen?

 

[lgelb]

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)

 

[I need answers]

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 .

 

[I need answers]

His was taken for biting the inside of his mouth.

 

[I need answers]

He was taking 2 in the morning , one in the afternoon , 2 at night .Everything he takes is through a feeding tube.Thank you

 

[I need answers]

Thank you all for replying .

 

[I need answers]

He was taking it because of biting the inside of his mouth .He has bulbar, and his mouth was always bleeding,No spasms anywhere else.

 

[I need answers]

He was told to take 2 in the morning ,1 in the afternoon and 2 at night .He can’t take anything by mouth , he use’s his feeding tube .

 

[lgelb]

OK, so he's taking it three times a day. That makes more sense, but as you can tell from our comments, it's not unusual to not be able to tolerate that. I would explain the issues to the VA (or any other place he gets care) and ask for other options as we have outlined.

What is the dosage of the five pills he is taking?

If the main issue is mouth biting (tongue or inside of cheeks?), a soft pliable plastic mouthguard might help. For me, baclofen would be a last resort if used for that issue alone, if nothing else worked. Or maybe a lower dosage + other approaches.

 

[Clearwater AL]

If he is biting the inside of his mouth accidently while eating is one thing.

If he is nervously chewing on the inside of his inner cheeks or around
the inside of his mouth… it's related to stress, and a coping method for
emotional overload and anxiety.

Baclofen is not the answer for that issue. Baclofen really isn’t an effective
treatment for facial muscles.

 

[affected]

My husband was bulbar onset with a lot of UMN involvement, and so a lot of spasticity.

He experienced a lot of biting the insides of his mouth, mostly in his sleep. It was partly due to the loosening of the muscles in the mouth. He would also grind his teeth in his sleep too. (never did before)

We tried a mouth guard which we had made but he couldn't tolerate it as it would cause an immediate and ongoing rush of saliva that would cause choking and panic.

Pretty much he just suffered it out until he lost enough muscle control that it stopped.

He tried baclofen but did not like side effects. I'm sorry I wish I could give answers, but do be careful if he has bulbar issues with filling his mouth with a guard especially with a lot of UMN as Chris could also have his jaw lock up unexpectedly.