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Thread: Trying to get off baclofen

  1. #51 still cutting back on baclofen?

  2. #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. =)

  3. #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.

  4. #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.

  5. #55
    I take 60mg per day and it helps alot. If it is helping why stop taking it?

  6. #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.

  7. #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.

  8. #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.

  9. #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.


  10. #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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