48 replies to this topic

[Boggs52]

20mg x 4 a day. I thought that was the max. I have been off it for a number of days when I forgot to place my order for more. Did not enjoy it. Without baclofen I kick like a Rockette.

[alex4bs]

\ take 90 mill gramme twice daily and busterpan cant go without them spasm is unbearable going against the natural curvature of my back

[timbo]

i also was wondering if my husband ought to back off the baclophen his tone is so bad and he is building muscle before the tone is leaving his body he has been on baclophen for over a year and it doesnt seem to be loosening the tone at all i know you dont want to buikld muscle before the tone is gone but i cant stop the building of muscle with his exercises help what do i do.....

[Snakeye]

I'm currently replacing bacoflen with valium. My doctors only advice was "take it slow"..Hoping to avoid withdrawel symptoms I've reduced from 20 mg a day to 5 mg a day over a thirty day period. Then I went to 2.5mg for two weeks, then about 2.5 taken every other day for two weeks.I went cold turkey three days ago with no ill effects so far. I've heard withdrawel can occur with oral baclofen even four days after one quits....My question is: Reckon I'm home free?....

[Snakeye]

OK.... I'll re-phrase my inquiry... For those on this forum who had to wean themselves off bacoflen, what was your method? How quickly did you reduce your dosage and over how much time?

[airart1]

i just quit............wasnt taking that high of a dose though........

[Shaunbbassin]

I think my baclofen level trumps most on here. I take 80mg 3x a day. 6am/1pm/9pm

I am going on 12 years post injury. Was on baclofen by mouth for probably 3 years, then got a pump, and loved it for 4+ years. No meds, no spasms, but then it started acting up so they took it out thinking the battery was going bad and put a new improved version in. After 6 months I started having funky symptoms and soon discovered I had a staph infection in the area of the pump. Took it back out and put me back on meds for a couple months to let body heel and clear out the infection. I done well enough with the meds that I have decided against going back with another pump, although after 4 years I am starting to change my mind again.

I was able to go back to school and get an bachelor of accountacy degree while having all the baclofen in my system. I can tell I am a little fuzzy headed but it really doesnt hamper me, although I would like to see what it felt like again to not have all that baclofen going through my system.

[Shaunbbassin]

Snakeye, on 14 July 2010 - 09:09 PM, said:

I'm currently replacing bacoflen with valium. My doctors only advice was "take it slow"..Hoping to avoid withdrawel symptoms I've reduced from 20 mg a day to 5 mg a day over a thirty day period. Then I went to 2.5mg for two weeks, then about 2.5 taken every other day for two weeks.I went cold turkey three days ago with no ill effects so far. I've heard withdrawel can occur with oral baclofen even four days after one quits....My question is: Reckon I'm home free?....

Yes, I do believe you are home free. I have had a couple spells with withdrawals, and you will know it when it happens. My first encounter with it was when the pump messed up because the catheter was kinked. I woke up with this entire body itch that I couldnt scratch. Your skin feels pin-prickly, so that it hurts to wear a shirt, and is quite possibly the worst feeling in the world. My second encounter was after a surgery. I had had pump taken out a couple years earlier and was taking baclofen by mouth. Anyway, I had a tube in my throat after an abdominal surgery so I couldnt eat or take meds for about 5 days post surgery. After about the 2nd day it hit, same as first encounter.

If for some reason you are in hospital when going through withdrawals and cant/dont want to take any more baclofen, then a combination of ativan(IV strength) and pain meds will ease the withdrawal symptoms to make them tolerable for a day or two while your system dries out.

[Snakeye]

I have successfully withdrawn from Baclofen and suffered no negative symptoms... Thank goodness and thank you for your response.....

[slyd]

Snakeye, on 29 July 2010 - 11:09 PM, said:

I have successfully withdrawn from Baclofen and suffered no negative symptoms... Thank goodness and thank you for your response.....

Hey good one on that . . !
My body rejects Baclofen so badly . . . replacement thru Gabapentin is my saviour

[Gary Wilson]

Hubby Gary was on baclofen 2 pills 3X a day.

Decided to try and wean off it very slowly, as you are supposed to do. Dose went down bit by bit over a month, no big problems until finally went to zero baclofen. Violent leg spasms all night, and trying to do IC's as he had successfully for 1 1/2 yrs, he found he could not insert the catheter.

No way, so off to the Emergency to get bladder drained fast! They put in a temporary indwelling catheter. THEN we learn from the net that the external bladder sphincter is the same muscle fibre as the legs, so the sphincter had spasmed and closed up with cessation of the baclofen. Nobody had ever mentioned this as a possibility from stopping baclofen. So back on the previous baclofen dose.

BUT - from the indwelling catheter he got a bad UTI which then caused more leg and sphincter spasms. So, again IC's impossible, more visits to Emerg. UTI has been cleaned up (we hope) with antibiotics, then D-Mannose when we found out about it.

BUT trying to do IC's again, - the antibiotics had caused constipation which caused spasms again. Back to the Emerg and an indwelling catheter.

So for him, the spasms of the legs and bladder sphincter are closely linked, and caused by lack of baclofen, UTI's and constipation issues.
And it all started with trying to get off baclofen.

He's hoping to get all 3 issues under control, and try the IC's again next week.

- Gary's caregiver

[NurseLisa]

Just FYI we have a patient taking 20mg tabs 3 of them 4 times a day. Same dose as Shaunbbassin. That is the most I have seen so far before a pump is most definitely due.

[Cauda Equina1]

I've been taking 30 mg of Baclofen daily ( 10 mg x 3)for 25 years and have nothing but positive things to say about it. My liver and kidney functions are tested regularly and all work great.

[goose]

i weaned myself off of Baclofen years ago and my spasams got better. i took several weeks to do it and drank lots of water to help flush it out of my system. that was over 20yrs. ago.

[JuanC]

Just ween off of it, and if your spasms are to bad you can go back on. worth a try, and it'll save money

[tsh3406]

I have found, in my own case, that it decreased my ability to withstand high heat and humidity during the summer, decreased my ability to take deep breaths, made my legs very weak and significantly inhibited sexual function. I've also been told it can wreak havoc on your liver. I've been off of it for 3 years now, I take 4AP in its place, and for one reason or another have noted significant improvement in every aspect....

T

[GarryB]

I was taking 60mg per day and was just generally feeling terrible. Decided to wean off. In 2 - 2.5 weeks I'm down to 20mg per day. Right now my spasms are OK except when my caregivers do my leg stretching in the AM. Then they jump like wild. Once I'm in the chair spasms are not a problem. But I'm wondering if I slowed down too quickly because I have experienced weakness in my arms, inability to sleep, fatigue and just felt depressed and irritable (to name just a few effects). This is not normal for me. I'm planning to hold at 20mg for a while before trying to step down again.

The Wikipedia article on Baclofen list all kinds of symptoms:

"Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, dizziness, Nausea, Feeling Faint, inattention, memory impairments, perceptual disturbances, pruritus/itching, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity."

(http://en.wikipedia.org/wiki/Baclofen)

My goal is to get down to 10mg per day and maybe even 5mg. If I can get there I will try to get off completely.

But after reading people post here that they wean off over a period on months I wonder if I went down too fast and if so hope my body adjusts soon. Baclofen has it's place but after feeling the bad effects it can have I want as little of it as possible.

[gypsyrose1112]

I have been taking 35 mg of baclofen 3 times per day for the last 2 years. Now were talking about the pump. Curiously, when I went for the trial they gave me a 25 mcg. bolus and it worked beautifully. Along with reducing my spasticity I noticed how much clearer my thinking was. I guess I didn't realize how clouded my mind was on the oral baclofen. It was like coming out of a fog

[KiKi09]

Hi~
My friend has moderate to severe spastic Cerebral Palsy, and her doctor has suggested a Baclofen pump. I was wondering, about how long is recovery for having the surgery? My friend has a 20 month old son and I will be taking care of him temporarily if she decides to undergo the surgery. I would like to get a general idea of approximately how long she would be in hospital, and how long she might need to recuperate before hecomes home to her. Thanks everyone! :-)