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Thread: Has anyone gotten off the baclofen pump?

  1. #1

    Has anyone gotten off the baclofen pump?

    Baclofen is one of those drugs that is hard to stop taking. Withdrawal symptoms include severe spasms. That means when you're trying to get off the pump, you may get severe spasms that may not otherwise exist. That may lead you to think your spasms are too strong to quit baclofen. But in reality the spasms may be due to withdrawal not your SCI. Question is how do you know for sure? You'd have to wait a long time to verify if it's withdrawal or due to your SCI. For me, that's been a long time of misery with no definitive answers. Has anyone else shut the pump off, had the spasms reduce but increase again, and you had to consider turning it back on?

  2. #2
    1. Don't attempt to discontinue baclofen on your own, this can be life threatening.
    2. If you're get off of baclofen have a doctor you can talk to who is willing to work with you set you on a plan to taper it.
    3. Go slow... like really, really slow, and like you said, be ready for the increased spasms, there's no way of knowing until your off of it.

  3. #3
    Senior Member zagam's Avatar
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    I have to take it. The secret is just taking enough to make life bearable. You will need to taper down slowly. The lower dose the less likely side effects will be problematic.

    Reducing dose abruptly may result in convulsions, severe spasticity, rhabdomyolisis and pine wood box.

    Muscle pain can also trigger AD if you are susceptible to it.

    If you need more an intrathecal pump such as Codman will be better tolerated than oral Baclofen.

    The reason I mentioned the Codman pump is that I do not want my life to be dependent on rock bottom software. I don't think Codman pumps are approved in Australia so tolerating oral Baclofen.

  4. #4
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    i did but thonking of starting to go oral as tizandine is not that great

  5. #5
    Thanks for the replies. This is all under doctor supervision. I can't adjust my own pump if I wanted. It can be adjusted only by a Medtronic device at the doctor's office.

    My question are:

    1- Has anyone been able to get off the pump?
    If so, how long and what experiences?
    2- Has anyone had to go back on? If so after how long, and what experiences?

  6. #6
    Quote Originally Posted by vjls View Post
    i did but thonking of starting to go oral as tizandine is not that great
    I've used oral baclofen to reduce the withdrawal symptoms after reducing the pump dose. I am also using oral baclofen for the same reasons now that the pump is off. But the spasms are severe. Just wondering if the cause of the severe spasms is my SCI or simply baclofen withdrawal?.

  7. #7
    I had one get infected once after they got changed out. The stitches on my back got infected an infection traveled to the pump. They had to take it out.. On top of baclofen I also had Dilaudid iin it. I spent a week hallucinating and my specimens were so bad that I couldn't get out of bed. They were jamming me with oral baclofen, probably way too much in the highest you can do during the day. This was 10 or 11 years ago. Since then, my dosage has increased considerably so I'm not sure what would happen.. I also have fentanyl in it right now to help get rid of some back pain. It kind of helps but I know without it, I'm totally miserable. Then there tried it. Good luck with whatever you plan on doing. Personally, there's no way I can get off mine and survive. Every little motion I make would cause an intense spasm
    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.

  8. #8
    It isn't withdrawal that is just spasticity from SCI. Withdrawal has altered mental status( a little off to hallucinations), itching, coma, death. Most people don't remove unless infected or something. If pills would have worked and no side effects- then you wouldn't have had the pump placed. It is placed only for those who still have significant spasticity despite all antispasmodics or side effects that can't be tolerated.You must have the dosing of the Baclofen pump slowly titrated down as you can go in to withdrawal which is life threatening. It takes about 3-4 weeks ( and that is a fast titration down- a change about every other day or so) to go down to the Minimal daily rate( MDR). Then it is suggested that it be refilled with preservative free saline so you can see how it will be without the pump/baclofen.
    CWO

  9. #9
    Quote Originally Posted by SCI-Nurse View Post
    You must have the dosing of the Baclofen pump slowly titrated down as you can go in to withdrawal which is life threatening. It takes about 3-4 weeks.
    It's been titrated over several months. Sometimes after going down on the dosage I would get withdrawal symptoms including severe spasms, itching, and headaches. Oral baclofen always stopped the withdrawal symptoms, except this last time when I went from 8 micrograms/day to 0. I have been on and off baclofen over 30 years, so it's not a clear cut case that I must have it. But it's not clear cut that I can get off it either. Maybe going from 8 micrograms to zero was too much. But my understanding is that there is no step between 8 and 0.

  10. #10
    Unusual presentation but every individual is different.
    CWO

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