Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: What to do when Baclofen Pump runs out?

  1. #1
    Senior Member
    Join Date
    Dec 2003
    Location
    Covington, Georgia
    Posts
    399

    What to do when Baclofen Pump runs out?

    I've had a Baclofen Pump for over 5 years now, but due to circumstances I no longer have insurance and my pump is due for a refill on 12/17. There is NO WAY I can afford to pay for it out of pocket and I am scared to death of what's going to happen when the pump runs out. I've moved to a new state (Georgia) and don't even have a doctor here because I have no insurance. My PM&R doctor in Michigan did give me a prescription of Baclofen 20mg pills on my last visit there, but only a month's worth (30 pills) How do I handle this? When should I start taking the oral Baclofen...on the 17th? 18th? Before then? I know I need the pills to combat withdrawal symptoms from the pump, but then how should I go about weaning off of the oral Baclofen before I run out of pills, too?
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  2. #2
    Go to the ER before your pump runs out and make sure the ER attending doc is aware that acute withdrawal from baclofen is life-threatening. Baclofen is as dangerous as alcohol and benzodiazipines when it comes to acute withdrawal...as in you can die.
    You need medical intervention before you try oral baclofen and before the pump runs out.

    This is from the Medtronics Website:http://www.medtronic.com/patients/se...isks/index.htm
    Please follow your doctor’s instruction closely because a sudden stop of intrathecal baclofen therapy can result in serious illness (baclofen withdrawal symptoms) such as high fever, changed mental status, muscle rigidity, and in rare cases multiple organ-system failure and death. It is very important that your doctor be called right away if you experience any of the above symptoms.

    It is important for you to keep your scheduled refill visits so you don’t run out of medication (intrathecal baclofen) and to understand the early symptoms of baclofen withdrawal. Some people are at more risk than others for baclofen withdrawal; consult with your doctor

  3. #3
    You might also contact Medtronics directly, perhaps they can help or least direct you to those who can.

  4. #4
    A few years ago I had to have my pump removed because of an infection. I spent the first three days hallucinating. My spasms were so bad there was no way I could sit my chair. I spent the whole month in the hospital. I think I ran a fever for a few days but all I know is it was horrible. Don't let it run out. You'll get serious problems possibly hallucinating. I got really really angry at a nurse for not giving me what I wanted. It turned out to be an IV pole. I was also listening there were cats underneath me. Get it refilled
    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.

  5. #5
    Senior Member
    Join Date
    Dec 2003
    Location
    Covington, Georgia
    Posts
    399
    Luckily my dad has offered to pay for the pump refill and I was able to find a PM&R doctor to fit me in (as a new patient and within a week, I'm amazed) next week! I was really really stressing about it and was absolutely scared to death of going through the withdrawal from it, especially since my doctor in MI was trying to push me off on Shepherd Center where I couldn't even get an appointment until months from now, so I felt like I was going into it blindly and without the supervision of a doctor! Medtronics, I have to say I absolutely LOVE their customer service, but they couldn't help much in regards to the dosing bc they said it would depend on my symptoms. They did calm me down and even Fed Ex'd the emergency information cards in case I had to go the ER. So, I'm safe for now!

    Rybread, if my dad hadn't offered to pay for it, refilling it WOULD NOT have been an option. Even with the doctor that fit me in, my dad had to pay a $1,000 deposit just for me to schedule the appointment. I don't have that kind of money! I'm good for now, but have to figure out what to do about the next refill in June.
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  6. #6
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
    Posts
    8,272
    Quote Originally Posted by TINAMARIE View Post
    Luckily my dad has offered to pay for the pump refill and I was able to find a PM&R doctor to fit me in (as a new patient and within a week, I'm amazed) next week! I was really really stressing about it and was absolutely scared to death of going through the withdrawal from it, especially since my doctor in MI was trying to push me off on Shepherd Center where I couldn't even get an appointment until months from now, so I felt like I was going into it blindly and without the supervision of a doctor! Medtronics, I have to say I absolutely LOVE their customer service, but they couldn't help much in regards to the dosing bc they said it would depend on my symptoms. They did calm me down and even Fed Ex'd the emergency information cards in case I had to go the ER. So, I'm safe for now!

    Rybread, if my dad hadn't offered to pay for it, refilling it WOULD NOT have been an option. Even with the doctor that fit me in, my dad had to pay a $1,000 deposit just for me to schedule the appointment. I don't have that kind of money! I'm good for now, but have to figure out what to do about the next refill in June.
    Tina, if you are worrying about the next refill, when you have it filled, have it turned down a bit. (Not sure how much, discuss that with the doc). Your spasms will be slightly worse, but it will go longer. Because the refill is based on how much med, and how long it lasts. You don't want to go to the point of making yourself miserable but just a little bit less.
    T7-8 since Feb 2005

  7. #7
    Senior Member
    Join Date
    Sep 2001
    Location
    middle georgia
    Posts
    2,398
    Quote Originally Posted by rybread View Post
    A few years ago I had to have my pump removed because of an infection. I spent the first three days hallucinating. My spasms were so bad there was no way I could sit my chair. I spent the whole month in the hospital. I think I ran a fever for a few days but all I know is it was horrible. Don't let it run out. You'll get serious problems possibly hallucinating. I got really really angry at a nurse for not giving me what I wanted. It turned out to be an IV pole. I was also listening there were cats underneath me. Get it refilled
    boy does that sound familiar had a 747 land o my roof its crazy scary

  8. #8
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Location
    Someplace between Nowhere and Goodbye
    Posts
    12,972
    The drug is only viable a certain amount of time no matter the dosage sjean. Depending on the pump reservoir size, it's 3 months or 6 months. That's the law - you have to get it refilled even if it's still half full due to the baclofen breaking down.

    Tina Marie, you need to get a printout from the doc when he refills it so you'll have your alarm date and other relative info.

    Quote Originally Posted by sjean423 View Post
    Tina, if you are worrying about the next refill, when you have it filled, have it turned down a bit. (Not sure how much, discuss that with the doc). Your spasms will be slightly worse, but it will go longer. Because the refill is based on how much med, and how long it lasts. You don't want to go to the point of making yourself miserable but just a little bit less.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  9. #9
    Cost of baclofen can be different too. Liquid lioresal is more expensive. I get my drug from a compounding pharmacy that charges a lot less.

  10. #10
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
    Posts
    8,272
    Quote Originally Posted by rdf View Post
    The drug is only viable a certain amount of time no matter the dosage sjean. Depending on the pump reservoir size, it's 3 months or 6 months. That's the law - you have to get it refilled even if it's still half full due to the baclofen breaking down.
    Thanks for catching that rdf ..... I have lowered the amt on mine slightly, and ended up with a longer stretch before a refill, but it was still less than 6 months.
    T7-8 since Feb 2005

Similar Threads

  1. baclofen pump vs. baclofen pills?
    By sci-co-pilot in forum Care
    Replies: 7
    Last Post: 08-13-2016, 11:40 AM
  2. Replies: 1
    Last Post: 10-28-2009, 11:17 AM
  3. baclofen pump vs. baclofen pills?
    By sci-co-pilot in forum Cure
    Replies: 1
    Last Post: 11-24-2003, 08:26 PM
  4. Replies: 15
    Last Post: 11-12-2002, 02:10 PM
  5. Replies: 1
    Last Post: 10-19-2002, 09:57 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •