Balcofen - How does it work for you?

Status
Not open for further replies.

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
My mom has experienced extreme leg pain for the past 7 months. At her most recent neuro visit, she was seen by a pain specialist who said that the leg pain stems from spasticity. He believes that my mom's muscles on continuously contracting, causing inflammation and thereby pain. He believes that this is the reason that her legs feel fatigued and throb even at night. To alleviate this, he put her on a regular balcofen dose. His program involved gradually increasing the balcofen dose until the correct level was attained. Unfortunately, the initial very very low dose made my mom extremely tired and fatigued. She could barely get out of bed. This said, it is unlikely that balcofen is the answer and my mom remains in much pain.

I was just wondering what other peoples experience has been with balcofen and if anyone has the pain and fatigued throbbing muscles.

thanks.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
sral

i know exactly the pain your mum is having,it is there 24/7 for 9yrs.
baclofen has been a godsend for me and i have been on it 8yrs.
i can not recall off hand if it made me tired in the begining,i have always been tired or fatigued since i got ill so probably did not notice.
she may need to persivere with it till her body gets used to it.
or the other option is a pump,i think this goes straight to the problem and cuts out the side effects.
on a night i take 20mg of baclofen and sleep med just so i can sleep.
i hope your mum can continue with the baclofen and the side effects diminish in time,if not talk to her neuro about the pump.
both of you take good care.
caroline:-D
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Caroline,

Thanks for your reply.

You are the first person who has said they have the same pain. The pain DR made it sound like he had heard this before yet I was unable to find anyone with similar symptoms.

Does the inflammation and pain go away with balcofen? What doses do you take throughout the day? My mom was told to start with 5mg 4x/day. This fatigued her too much and she is now taking 5mg 2x/day. However, the other night I told her to take 10mg before bed because if she felt tired she was sleeping anyway.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
the throbbing pain is mainly the worst in the thighs/upper legs,i think it is muscle fatigue from using the weak muscles.
it may feel like inflamation but is not,i had tons of inflamation tests done when i first got ill,all were clear.
baclofen can help relax the muscles,i am on a dose of 20mg twice a day,extra 10-20mg on a really bad day.
i take 20mg a couple of hours before i go to sleep,i have a warm bath with a few drops of rosemary essential oil as this is a natural muscle relaxer .
i try to be in bed before 9pm so the meds can take effect and the muscles can relax for a couple of hours before sleep.
get her to try the rosemary bath,it really works and relaxes the muscles.
you can buy it from a chemist or natural herbal store.
take good care:-D
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Thanks Caroline.

The inflammation is only in her foot later in the day. The Dr is the one who said that the pain comes mainly from muscle spasms. My mom does not feel the spasm happening she only feels the pain.

Maybe she should try 5 mg in the morning, 5 mg around 2:00 and 10mg 2 hours before bed.

Thanks for the rosemary bath tip.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi sral. I've been taking 10mg morning and night plus 300mg of Quinine for about 3-4 years and am relatively pain and cramp free.

AL.
 

Kenny H

Member
Joined
May 22, 2008
Messages
22
Reason
DX UMND/PLS
Diagnosis
02/2005
Country
US
State
RI
City
Providence
Baclofen: No cigar..at Least for Me

I have tried it twice over the past two years...up to dosages of 60mg per day. It had no effect on my leg stiffness and made my speech worse. I am going to be trying something else...I will report on it to the Forum after I see what happens. A doc friend of mine once told me that all meds are poison to some people...you just don't know till you try it. If it works for you...that is great!
 

Roger Sanders

Member
Joined
Feb 28, 2008
Messages
19
Reason
DX UMND/PLS
Diagnosis
08/2006
Country
US
State
Go Colts!
City
Johnson City
Baclofen

I too have pain 24/7 from my calves up to my hamstring (cramping, throbbing). I used to be on zanaflex but it made me too sleepy. I am now on baclofen 60mg per day and it is better with less sleepy side effects. Although the bac. is not enough, I take hydrocodone 3 times per day and a percocet at bedtime to help me make it through the night. This system has made the pain more tolerable lately but I still have flair-ups when it seems like nothing helps.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Thank you everyone for your responses.

I think she'll need to play around with the balcofen abit more, perhaps taking a slightly stronger dose (10mg) prior to bed and lighter, 5mg, doses during the day.

As for the other item being tried, yes please keep us posted as to how it goes.

Thanks again.
 

xina

New member
Joined
Mar 14, 2008
Messages
8
Reason
DX UMND/PLS
Diagnosis
01/2008
Country
US
State
NY
City
Albany
baclofen made me wet the bed. had to stop taking it. still struggling with painful spasticity (i take tizanidine - the max dosage- and valium as needed - but i've still got a lot of pain). all of the drugs i take make me sleepy. sometimes i nod off like a junkie...it is really frustrating.
 
Status
Not open for further replies.
Top