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Baclofen side effects long term and if I stopped

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  • Baclofen side effects long term and if I stopped

    Hi

    I'm s/p 29 years in 08/26/06. I'm a c7-c8 inc. I'm in good health, live independently (w/partner) and do all my own B/B care. I didn't take any spasm meds till 1997. I was working a 40 hour week at U.C. SANTA CRUZ but was having trouble sleeping. My spasms were keeping me awake at night and causing discomfort in my LE's. I've been taking Baclofen for 8 1/2 years.

    I'm considering stop taking Baclofen. I medical have concerns for LT use and side effects. Will it hurt me physically if I wean off it slowly. Baclofen doesn't do a whole lot for me except for the severity of the spasm.

    Thank You
    FreeBird
    Skynard LIVES
    Lynarrd Skynyrd Lives

  • #2
    I read a bunch of things about Baclofen and decided to stop as well. I didn't tapper down though, I just quit. Not the best idea but I didn't have any bad side effects. My spasms have basically stopped. I might have a few every now and then but they are very, VERY rare. I'd rather be without Baclofen and Gabapentin so that's what I'm aiming for.

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    • #3
      I am at 20 mgs a day down from 40, hopefully on my way down to 0 (eventhough I just bought a 270 day supply today).

      Skynyrd does rule.
      T6 complete (or so I think), SCI since September 21, 2003

      Comment


      • #4
        FreeBird, I had problems when Baclofen was prescribed to me and am unable to take it. I did however find this info in answer to your question, I believe.

        Suddenly stopping baclofen may cause seizures, hallucinations, and rebound spasticity.
        http://www.exploringspasticity.com/e...reat-oral.html

        Good luck with your decision.

        BTW, Love your choice of name. Hopefully I will one day use it for my planned skydive.
        Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

        A warrior is not one who always wins,
        but one who keeps on fighting to the end ~ Unknown ~

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        • #5
          That's what I was wondering by

          weaning instead of total stoppage. Don't need a seizure
          Originally posted by Raven
          FreeBird, I had problems when Baclofen was prescribed to me and am unable to take it. I did however find this info in answer to your question, I believe.



          http://www.exploringspasticity.com/e...reat-oral.html

          Good luck with your decision.

          BTW, Love your choice of name. Hopefully I will one day use it for my planned skydive.
          Lynarrd Skynyrd Lives

          Comment


          • #6
            What are the long time use negative side effects you are referring to? Do these side effects also apply to intrathecal baclofen?

            Comment


            • #7
              DO NOT STOP TAKING BACLOFEN SUDDENLY!!!!!! You can have headaches, seizures, horrible dreams and frank psychosis. I remember one very nice young man who stopped suddenly and had to be kept in four point leather restraints because he was so agitated. If you want to stop, discuss it with your provider and WEAN SLOWLY. Trust me. You don't want to go through the side effects.

              Also, you have to decide if you can live with your spasticity. Sometimes it's not only uncomfortable but positively dangerous--like throw you out of your wheelchair onto the ground dangerous.

              RAB
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • #8
                The side effects also apply, in spades, to intrathecal baclofen. Do not let your pump run dry.

                RAB
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                • #9
                  When I had my Baclofen stopped cold turkey many years ago because I suddenly developed double vision (dr thought Baclofen might have been the cause--it wasn't and to this day that double vision is still unexplained) I developed total insomnia for three nights straight, until the baclofen was resumed. (I had only been on a low dose of it for a month or so when all this took place.)

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                  • #10
                    Hi, I've been taking 30mg of Baclofen three times a day for over ten years. When I've tried slowly stopping in the past, my spasms got worse. Now I just stay at that dosage. I don't think I have any side effects from it. It's all I've ever taken for spasms.

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                    • #11
                      We were told that long term high usage could result in Liver damage. I don't know the definition of either "long term" or "high dosage". My husband is on 10 mg bid. This is considered very low. I know they told us some people take as much as 200mg. So I assume that to be high. When on high dosage, liver funciton testing is supposed to be done.

                      We were also told not to stop suddenly, even from the low dosage my husband is on.

                      My husband hates taking meds, never took athing pre-sci. But in my view, they are a necessary evil. Have to determine if the benefit outweighs the risk.

                      Comment


                      • #12
                        RAB that happened to me yesterday. I was leaning over and a BIG spasm caught me. And I hit the floor
                        Originally posted by SCI-Nurse
                        DO NOT STOP TAKING BACLOFEN SUDDENLY!!!!!! You can have headaches, seizures, horrible dreams and frank psychosis. I remember one very nice young man who stopped suddenly and had to be kept in four point leather restraints because he was so agitated. If you want to stop, discuss it with your provider and WEAN SLOWLY. Trust me. You don't want to go through the side effects.

                        Also, you have to decide if you can live with your spasticity. Sometimes it's not only uncomfortable but positively dangerous--like throw you out of your wheelchair onto the ground dangerous.

                        RAB
                        Lynarrd Skynyrd Lives

                        Comment


                        • #13
                          I'm taking 20 mg 2x qd

                          Soon as I made a reduction my spasms increased. I've never should of started. Live and learn. I'm gonna talk to my GP. There are no SCI specialists in my area.
                          Originally posted by kittim
                          We were told that long term high usage could result in Liver damage. I don't know the definition of either "long term" or "high dosage". My husband is on 10 mg bid. This is considered very low. I know they told us some people take as much as 200mg. So I assume that to be high. When on high dosage, liver funciton testing is supposed to be done.

                          We were also told not to stop suddenly, even from the low dosage my husband is on.

                          My husband hates taking meds, never took athing pre-sci. But in my view, they are a necessary evil. Have to determine if the benefit outweighs the risk.
                          Lynarrd Skynyrd Lives

                          Comment


                          • #14
                            Hi,
                            When I first had my accident 12 years ago my muscle spasms were shocking so I was started on baclofen almost straight away, cant remember the dose now but I can remember it was a high amount.After 12 months or so I noticed that my spasms were actually getting worse so I slowly weaned myself off them over a period of 3 weeks or so and my spasms dramatically improved, I am now on dantrim(I'm in australia so I'm not sure if this drug is used in the states or not but it seem to work fine).After going off the baclofen though my spinal dr actually told me that some patients taking baclofen can actually have an adverse effect to it meaning that the spasms actually become worse, so I guess its not for everyone and we are all different, its a case of trial and error, but I wouldn't advise just stopping it if you have been on it for some time becuase of the seizures just wean off it and see how you go from there.
                            Hope it all works out for you

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                            • #15
                              I weaned off baclofen last week after having bad side fx from Lyrica. (The Lyrica reaction has me evaluating any med much more carefully.) While spasms have increased and hurt like hell, I have more energy and don't feel as fatigued and "heavy" or sluggish in my movements.

                              If it gets too painful I can always take baclofen again. For now, I'd rather do without.

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