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Trying to get off baclofen

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    #46
    I feel great ! Energy is up and back to being fully independent and my pain level is great!! Biggest area where my strength has come back is my core muscles.

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      #47
      I take 80mg a day. 20mg x4
      I ride my fes bike 2 days on 1 day off and stand for over an hour everyday and my spasms are still bad. I didnt know about dropping down in low doses so for 2 weeks I went to 60mg a day. The only difference I noticed was worse spasms, increased tone, and the slight movement I have was stronger.
      c6 inc since 2-19-11
      ex pro-am motocross racer
      tilite aero z s2

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        #48
        To be clear about baclofen I didn't have spasms before I took it. I took it to help my bladder and to reduce a little tone. I feel the way I did 10 months ago " before" I took baclofen.

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          #49
          I have been on baclofen for over a yr. now at 30mg doses 3 times a day. I missed my medication one morning and while doing my daily walker exercise I noticed my legs had added strength, which allowed me to walk 3 times as far as I normally do. Yes my legs were stiffer and I'm feeling a little weird, shortness of breath, a little anxity. Today I had my wife only give me 20mg dosage instead of the 30mg. After reading these post's it clear that I shouldn't start reduceing meds without doctors advice, however if you only new how tuff it is to see the Dr. Appts are sometimes 3 months out. I have had 2 major back operations in the last yr. the second operation has left me with new weekness on top of old weakness. My therapy is 4 times a week threw a local jr. college I've been working on all that I should be working on with little results. After walking with walker 3 times as far.....has given me some much needed hope. Any advice would be helpful.

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            #50
            My son has CP. He has been completely off baclofen for two months now. When he was on the stuff, he couldn't walk. Today he is able to walk with assistance behind a walker. His spasticity is fully under control from his stretching exercises. (he's been exercising 2 to 3 hours a day for the last month). My guess is that within a month, he will be able to walk without assitance. And the best part, is his mood has improved dramatically. It is truely a blessing get off the drug.

            Now here is the bad news. He had a huge problem getting off the baclofen....not physicially, but mentally he was a mess....beyond what we could have imagined. So if you are going to try to get off the stuff, you may need lots of help with potential psych problems. We were lucky we had a good psychiatrist who believed my sons mental problems were related to the baclofen. Everyone is different, and you may not encounter psych problems getting off the stuff. Good luck and God help you.
            Last edited by zevobru; 21 Mar 2012, 7:05 AM.

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              #51
              FatMan82...you still cutting back on baclofen?

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                #52
                Been reading a lot on Baclofen and I'm convinced that its not the medication for me. I don't want to drink the cool-aid!!!!
                I have been slowly dropping my dosage from 120mg a day or 40mg TID. I dropped down to 20mg BID which was 20mg in the morning about 8a.m. and 20mg before sleep 11 p.m.. I was on this schedule for maybe 7 months and really didn't see much change from when I was on 120 mg a day. I still had the spasms either stiffness or actual muscle fluctuations. It also didn't matter what I was doing sometimes I was good sometimes they were bad but nothing that would send me flying out my chair. I did notice when I would lower my dose I would have increased spasms but I would return to baseline after about a week.
                I am now down to 10mg in the morning and 20mg at night. I'm questioning if I should drop the night dose or do what many people do and just take the night dose to help sleep. (I never had trouble sleeping before I was on the medication related to spasms.) Again cool aid was forced on me Ha!

                Now the real head scratcher for me is that Baclofen is normally dosed TID since the half life is is like 1.5-4 hours. I'm assuming to keep the drug concentration at a somewhat stable level in the body. But I have seen many people only take it at night at fairly high dosages or only twice a day like I do.
                Doesn't this cause more harm if the drug concentration is fluctuating or does the body adjust to these swings?
                I know most of the med is metabolized out of the tissue rather quickly but much slower out of the CNS thus needing a longer wean to prevent bad things. Since about 80-85% of the drug is excreted unchanged in the urine does diuretics like coffee promote speed at which the drug is cleared from the body? If so... would this also cause a swing in how the body or severity of spams exhibit themselves? If this is the case I need to stop my coffee and Rockstar infusion. =)

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                  #53
                  The dosing schedules are based not only on half lives but also on the likelihood of the individual taking it - hence, TID is considered a timing that people will be more compliant with than say every 2 hour. They also look at how the drug works and since the amount that ends up in the CNS is more slowly excreted, that is figured into the recommendations. That being said, each person is an individual and reacts to the drugs a little differently. If you think that your spasms are worse at night, than I would recommend that you stay on the night dose. If you think your spasms are not any worse at night than any other time, or they don't keep you awake, then wean yourself from all of it. But it should be done under a physician's supervision. As far as I know, the diuretic effect should not be a factor, especially since you seem to take the same amount every day. Your body has accommodated for this already, as long as it is a part of your daily routine.
                  CKF
                  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.

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                    #54
                    My son is off baclofen now for over 4 months. He is doing considerablly better tnow than when he was on he pump dosing at 350 per day. Big question we have is why he ever was on the high of a dosage. If we learned anything it is this. If a little is good, more is not necessary better. Glad to see others are alos benefiting from reduced dosages.

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                      #55
                      I take 60mg per day and it helps alot. If it is helping why stop taking it?

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                        #56
                        Good luck Wheellin. My son's been off the stuff since late January. He is stronger, not tired all the time, and has been up on a walker and taking a couple steps. First time he could do that in 15 months. So the month or so of withdrawal, although horrific, is proving to worth it. Just a caution that you may want someone always around to help you if you hit a rough part like my son did.

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                          #57
                          And another work of caution that you need to do this with medical supervision! It is not a drug to take yourself off of without it.
                          CKF
                          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.

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                            #58
                            An update. My son has been off baclofen now for about 4 months. The increase in his strength and improved control over his muscles had been dramatic. He is able to walk slowly but uses a walker to help with his balance. He exercises daily to control his spasticity. Hopefully, he will be back to 100% within the next few months and this 13 month nightmare will be over.

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                              #59
                              baclofen weaning

                              I am glad your son's strength has returned since discontinuing/weaning off baclofen. As mentioned previously everyone responds to baclofen differently and it works for different people differently.

                              pbr
                              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.

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                                #60
                                Just an update. My son has been off baclofen for almost 8 months now. He has regained enough strength, balance and coordination to start using a walker. His speech is improving. Best news is that he no longer is having severe psych problems. He is getting back to his old self.

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