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Thread: Baclofen pump FAQ

  1. #41
    Senior Member darrel's Avatar
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    Thanks Simon,
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  2. #42
    Senior Member Cowboys_Place's Avatar
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    I am at the end of my rope, I have been a c4/5 for 24 years and have always taken baclofin orally but the last few years the spasticity in my feet and legs at night has gotten so bad I am lucky if I get 2 hours worth of sleep. It's gotten to the point where I take 7 10 mg tablets of it just at night which is probably a lot?
    Still the spasticity wins out so I am now thinking about A baclofin pump so can someone tell me how much it costs to refill this contraption and how often does it have to be refilled?
    I only have Medicare so I'm guessing like my oral medicine refills are going to come out of my pocket.
    Are there any hazards to it I should inquire about?
    thanks

  3. #43
    Quote Originally Posted by Cowboys_Place View Post
    I am at the end of my rope, I have been a c4/5 for 24 years and have always taken baclofin orally but the last few years the spasticity in my feet and legs at night has gotten so bad I am lucky if I get 2 hours worth of sleep. It's gotten to the point where I take 7 10 mg tablets of it just at night which is probably a lot?
    Still the spasticity wins out so I am now thinking about A baclofin pump so can someone tell me how much it costs to refill this contraption and how often does it have to be refilled?
    I only have Medicare so I'm guessing like my oral medicine refills are going to come out of my pocket.
    Are there any hazards to it I should inquire about?
    thanks
    I got my pump through my Medicare insurance and it doesn't cost me a dime to get a refill with just baclofen, but I don't know about any other drugs. I never get charged when I was trying other stuff out but I'm not sure if things have tightened up with Medicare or not. Whatever kind of doctor you visit will have all the warnings for you depending on what drug you get. When the very first got the pump, it didn't work and I slowly had to increase the dosage until I found one that worked. I'd say the biggest side effect you have to worry about is being a little sleepy at first, but I never had that problem until I started putting other drugs in it besides baclofen. You'll be able a tell all a lot more once you have the trial done. With the new pump at my dosage which is approximately 1500 mcg a day, I can go roughly a month, but my spasms are very severe and I require much more than most people do. My guess would be you would start probably no more than 200 mcg a day depending on how bad your spasms were, you could probably go two or three months between refills.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  4. #44
    ........
    Last edited by addiesue; 11-07-2008 at 08:31 PM. Reason: double post

  5. #45
    I also have medicare and my refills are covered. I am on 225mgc a day and I get a refill every 6 months. I also have a pedi sized pump.

  6. #46
    Senior Member rdf's Avatar
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    Quote Originally Posted by addiesue View Post
    I also have medicare and my refills are covered. I am on 225mgc a day and I get a refill every 6 months. I also have a pedi sized pump.
    I get 15 mg per hour, 360 per day, and I have a reservoir that lasts six months. That's as long as you can go, legally, between refills. My pump is acting up big time, I believe there is a kink or crack in the catheter, and it's floppin me all over the place 24/7. Trying to get in for some diagnostics, because right now it's like before I ever had a pump. And those were the bad old days, bad being not good.
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  7. #47
    Yes when I go in for refill they have to take out medicine that is left over. Technically I wouldn't run out for a few more months but they say the meds would be old.
    How long has that been going on? Did you see the thread here about the recall on some catheters? I hope you get it looked at quick. Getting overdose or withdrawal is not good. I have been through withdrawal when my cath messed up. It was horrible.

  8. #48
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    That doesn;t sound good rdf!

    Mine was just refilled last week, if is around 170 a day, and like addiesue says lasts 6 months. They take out what is left over, and compare it to the calculated amount that should be left. It helps to check that it was working properly.

    I am getting it refilled a 5 months next time though. The last 2 days before my refill were the absolute worst I had had in the 6 months. I actually expected that they wouldn;t find anything left in the pump, but they did. My tone is erratic, so some days are better that others. I have tried to tweak it so that most of the time I am good, but that means I will have some bad days. and some over-medicated super floppy days. But these days were approaching pre-pump levels. MY doctor said that if was possible that as the meds got older, they didn;t work as well for me. Hence the 5 month refill.

    My insurance covers it, so I am not sure what it would cost. I don;t think it was treated as a prescription med would be, as I have a separate plan for prescriptions, and it went to my medical.
    T7-8 since Feb 2005

  9. #49
    It goes to medical not scripts with medicare also. I had mine refilled Monday. Ever since then I have had worse tone and nerve pain. I keep hoping it's the weather change.

  10. #50
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    The weather really kicks my tone up several notches.
    T7-8 since Feb 2005

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