Baclofen dosage and side effects

[Zaphoon]

One of the V.A. neuros attributed it to PLS. No one else offered so much as a guess. GP passed me on to the neuros who either retired or passed me on to the rheumies who passed me back to the neuros. A V.A. neuro finally told me I probably wouldn't find any concrete answers at the V.A. and to go away (after calling me a zebra in a field of giraffes).

I am seeing the neuro I started with next month, presumably for a referral to a local rheumy. Something to do with identical oligloconal bands in serum and csf.

 

[Brother Rock]

Does everyone here with a PLS diagnosis take Baclofen? Does it help? I have been taking 2 mg of Tizanidine for about a year--seems to relax the legs at night. At the most recent ALS Clinic I attended I asked the neuro if baclofen would relieve any of the spasticity in my legs. She prescribed a starter dose of 5 mg but warned me it might make me weaker at first. I have taken it for 30 days and don't notice any real difference in spasticity but I am coughing more and my hands seem to be weaker. The only benefit I'm aware of is less leg cramping at night. I do not take the Tizanidine unless my legs are too restless to allow me to sleep.

I am wondering if I should discontinue Baclofen. I would appreciate any advice anyone has. Thank you.

I have just finished my first week of 1/2 dosage of Baclofen. It seemed to reducem my numbness and tingling by round 75-80% for the first 4 days then on Friday it was only about 40-50%. I was really pleased at first but Friday a bit disappointed. But I figure increase in dosage will help so I wait for the doctor's order to do so. I will let you know how it goes.

 

[old dog]

Thanks, Brother Rock. Keep us posted and good luck. I am taking an occasional flexeril when pain becomes intolerable. Try not to take one more often than once a week. Have recently borrowed a low-to-the-floor recumbent bike that I can get on and off without help. Think it is going to help even though I'm only doing 5 to 7 minutes per session. I still like "hanging around" on the inversion table but have to have assistance to climb on and off so don't use it very often.

 

[Brother Rock]

I am learning things from here too. I am wondering if I have Pls or not after seeing the problems others are having, especially the spasticity problems. I have numbness, tingling, and losing strength and muscles in my right leg and now my left leg is starting like the right leg did. My feet have cramps when stretch but that is it. My spine cord does not have pressure anywhere to cause the problems. So once again, I do not know what my problems is. Brother Rock

 

[johnnyliverpool1]

brother...am wondering what you got also..given what you told us, you aint got the dreaded.......but one of loads of other things........takes a lot to get a diagnosed of mnd.......so rejoice ...johnny

 

[happygardener]

my husband tried bachlofen ,it helped with spacitiy but it affect his voice(which is bas to begin with but made it totally hard to understand) and he chocked more on it,We had to stop taking it .our theory is thats where it made him weaker.

 

[sadiemae]

Had a question from someone on another site asking if a baclofen pump will help you walk better. Her boyfriend is under the impression it will, and I never heard of this before.

 

[momap53]

Lori, I have a friend who has a baclofen pump for a spinal cord injury and it does help her to walk better. Not sure if they're helpful in PLS. She just underwent another surgery to replace a malfunctioning pump and will be off work for 6 weeks.

 

[sya15]

That is a very low dose. Baclofen does work to a certain extent. It takes time they start with small dose then increase it. Is botox an option for you?

 

[old dog]

sya15 - I was turned down for Botox injections to the larynx. The ENT is now trying to get approval for Botox to treat excessive saliva production. Botox for treatment of spasticity in the legs has not been discussed. My age is against me, as many insurance companies that work with Medicare do not recommend expensive treatment for people past age 57.

 

[sya15]

Old dog ,
I have patients that are being treated with Botox injections to lower and upper extremeties. My patients are CVA(stroke) spinal cord injury, MS. they are all older the youngest is 68. Insurance should cover it. You should ask about botox inj. for your LE to decrease spasticity. It works! My patients are taking baclofen however it decreases tone to a certain extent but once body gets used to it the tone increases again. Look into Botox again.

 

[old dog]

Thanks, sya15. Will make additional inquiries at next ALS Clinic appointment.