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Pain pump dosage increase time

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124

Comments

  • jbowerjbower wisconsin Posts: 31

    Sandra, I'm still waiting on my bracelet to come in the mail. When you get a Flowonix pump they automatically give everyone a medical id bracelet which is nice because I wouldn't have thought of that.

    I had my appointment on Tuesday and they emptied my pump for the first time. They used an ultrasound to make sure they hit the reservoir port the first try. That was interesting to see. You were right as well on the numbing medication, it was bupivacain. She didn't change the morphine to dilaudid but refilled it with the bupivacain and morphine mixture.

    She also increased the dosage again on the morphine. So now I am at 1.2 mg of morphine and 6 mg of bupivacain. That was a good call because I am finally starting to get pain relief from the bupivacain :) I'm not at 50% yet but at least I am on the right path now. I go in again next Tuesday so that will be another increase.

    I also asked about taking the oral meds and she said to still use them when needed. She doesn't want to start taking me off yet until we start seeing good results from the pump. Also the reason my pump was acting crazy (or I thought it was) had to do with how often I was using the handheld device for the bolus dose. I wasn't using it the same amount of times each day which is why my refill date was going up and down.

    You are right, the more time that goes by the more knowledgeable we are becoming on these pumps. We'll be pros before we know it..lol

    I'm glad I can keep getting in once a week since I don't have to pay for any of these visits with hitting max out of pocket. So the closer I can get to finding the right spot before year end the better.

    Taking it one day at a time, that is all we really can do while living with chronic pain.

  • jonisingt35rjjonisingt35r Posts: 165
    edited 11/30/2017 - 2:47 AM

    Wonder if someone could help me, I did talk to my doctor the other day about a pump could someone please tell me the criteria for having a pump fitted, I am a long term chronic sciatic pain suffer of pain, all over this does sound good as its.less meds, the side effects are just horrible so many if I get the pump they would be less?

    From the UK

    Thank you

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  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118

    Had my pump implanted in mid September 2017. Saw the PM doc every 2 weeks until mid November when we reached the point where I thought my pain was manageable at 1.5 mg per day including the boluses. Each visit he would increase the morphine between 10 and 20 %. In the month since my last adjustment, my pain has increased to the point where I give myself a bolus every 4 hours but limited to 4 x per day and I'm usually timing it too - right now I have 34 minutes until I can give myself the next one. With that said though, I'm no longer on fentanyl patches, methadone, or anything other than the morphine in my pump and my pain is less debilitating but I do need the morphine increased again. I agree a journal can be helpful to show your PM doc to prove your point. It is tough to find the right PM doc. Good luck.

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118

    Jason, reread your posts and see that you are working! You must be a real stud muffin as an old boss used to say. I had to stop working (for the second time) almost 5 years ago and I cannot imagine trying to work with the debilitating pain we have! I'm very glad to hear that you are doing better too and especially that you found a "compassionate" medical professional to help you. I am surprised that you continue to receive oral meds with your pain pump. My fentanyl patches and methadone were eliminated the day my pump was implanted.

  • Hello, I'm new on here. I've had a Medtronic pain pump for over 12 or so years now. I'm actually on my 4th pump. This pump has been defective from the moment it was put in. For example, when it says it has a certain amount of medicine left in it, according to the monitor, it actually will have anywhere from 20 - 40% less than that in it! This has caused me to go into severe withdrawal on two occasions when I couldn't get ahold of the pain clinic I go to. Medtronic says that it still is within their averages so they will not replace the pump yet despite my doctors many calls to them about it. He is very upset about the matter. I live over an hour and a half from the clinic and the last time it went dry on me, I was visiting grandchildren 1600 miles away and barely made it home on my flight. My pump has Dilaudid in it. I started out with Morphine for several years, then was switched to Fentanyl (a very big mistake), then to the Dilaudid. I was just wondering if anyone else is having issues like I am. My doctor, who has many pump patients, claims he has never had a pump do this before, only the opposite (claim to be empty but still have medicine in it). Thank you.

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  • Hello @jbower, I have had the pump implated Sept 2017. Im still in the triating phase. Actually my intial pump fill consisted of .3000mg Morphine in late november. I've had 3 adjustments following. Its been quite slow for me.

    I agree with you that they start you out in very small doses. My trial went to 3mg to hit the wonderful relief mark. Right now im adjusted to .4500mg Morphine. They have me come in every 2 weeks. At this pace it seems it will take until forever to get to my sweet spot. At first they did a 15% increase, then second appt only 10% (because i told them i was itchy for a couple days), my third appt was 20%. I have my fourth appt on the 27th of Dec. Whenever I question "Why so slow" my PM says its much easier to go up than down. Oh well, im just happy I did it.. Well i mean, i used to wake up every 20 minutes during the night while taking 45 minutes to fall back asleep. So in that aspect Im happy. And that could be because i take desryl at night for sleeping which may increase the effect of the desryl. I dont know.. Im also still taking my oral meds.

    I do have a question for you. Is your dose of Morphine 2mg concentration? You dont have to tell me because i know all this is personal.

    Nicw to see a member here with a pump. As Sandra has said, their aren't many here with a pump. THANK GOODNESS for SANDRA.. She has been so very kind to me. She is highly knowledgeable as well since she has had hers for many years and goes thru alot of UPS and DOWNS.

    Have a Merry Christmas...

    Sincerely, Mardee

  • memerainboltmemerainbolt IndianaPosts: 3,432

    Mardee
    Merry Christmas!

    As a matter of fact, I've only had my pump since last Jan. and try to stay on top of it all for all of our members as well as myself. I always go to the doctor armed with questions and do not leave without answers.
    When I first got my pump, the increases were 10%-20% but after that it slowed down. In a way, I'm ok with that. I would rather have more room to increase as my back deteriorates more. But I'm still in pain and it should have eased some. I go back this Thursday for a refill and an increase. My neurosurgeon says my PM doctor is not being aggressive enough, I just don't want too much. I stayed tired as it is. Does anyone else have that problem?

    Judyee and Jerome
    Welcome to Spine-Health and our world of pumps!! Glad you joined us. Feel free to ask questions and give opinions, this is how we help each other.

    I apologize for the delay in responding though.
    Everyone have a Merry Christmas and Happy Holidays

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • jbowerjbower wisconsin Posts: 31

    Hi everyone,

    Sorry it has been so long at getting back. It's been about a month now and didn't realize how many responses I had while out. Not too much has changed though. I just had my second pump refill today and he adjusted me from 1.8mg of morphine to 2.3mg of morphine and 7.8mg of bupivacain. I'm still going in once a week to get adjusted but it is taking a long time to feel noticable relief.

    It's odd because my lower back feels great which is what I told the doc but it doesn't seem to be doing really anything for my thoracic pain. That's when he said he'll do a big increase with the constant flow this time as the last time he made a big adjustment to the ptc programmer.

    It really has been a rollercoaster lately though with this not working much yet. Between life and work. With winter here I have noticed my pain levels have increased more than normal which makes it hard to concentrate. I'm just really lucky to be in Credit as I have my own accounts I handles and don't have to worry about others around me and my medical issues.

    I'm still on all of my oral meds and I have done the same about counting down the time before I can use the PTC programmer again. I just keep telling myself that we will get there at some point...

    Mardee to answer your question about the medication, it's a constant flow all day of morphine and bupivacain. Which there are times when I feel like it's the same as taking oral meds because I'll be feeling great and then it goes away. It's really interesting how the adjustments make your endorphins react differently each time. Now if it could do the same on the pain receptors then I will be great :)

    Taking it one day at a time, that is all we really can do while living with chronic pain.

  • memerainboltmemerainbolt IndianaPosts: 3,432

    Hey jbower!!

    Nice to hear from you. I know, such a slow process but it has to be. As far as your pain in your thoracic area being controlled, my neurosurgeon explained it best. My catheter is at T1. He put it there to cover from the top to the bottom. Gravity alone pulls it down. My PM doctor was wanting it moved to T10 but neuro said no because of the cervical issues that popped up.

    I think one of the biggest reasons my pain has spiked is because it's cold, and I'm cold. I'm warm, but I'm cold, if that makes sense. When I'm cold I tense up but keep telling myself let go and breathe. You are still on a low dose. Talk to your doctor about a 10-15% increase,you can always go down.

    Take care!!

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • jbowerjbower wisconsin Posts: 31

    Hi Sandra,

    That's good to hear you found out what was going on with where the catheter was placed. At least I'm not the only one who thinks the cold is affecting things :) The temps here in Wisconsin are up and down. Last week we hit in the 50s and then dropped to the teens.

    I'm still trying to figure out the percentage of the increases. They keep telling me they are giving me big increases. I'm starting to feel some relief now with it at 2.3mg. On Friday when he refilled the pump he said my next visit he may have to re-adjust the ptc. It locked out for 18 hours when he refilled the pump and made the increase in my constant flow. I thought that was a bit odd but that's what happened.

    But he said he may need to lower the ptc amount because it may be too much now. Which he was right because yesterday when I used it I ended up falling asleep..lol I was asking if he could change it from every 4 hours to every 2 hours but he said let's wait till I come in again to see where we are at.

    I started getting hot flashes a few weeks ago from this though. I would be sitting at work then just start sweating really bad for 10 minutes or so then go back to normal. It happens about three times a day. Also when I used the ptc I would feel the bupivacain working. Right above my thighs to my knees would get numb. I mentioned all of this to the doc and he said the hot flashes is a side affect of the morphine that my body should adjust over time with each increase. As far as the numbing he said he'll have to decrease the bupivacain setting a bit on the ptc so that doesn't happen.

    I go in again in two weeks so hopefully with each increase we will be closer to the sweet spot.

    Talk to you later,

    Jason

    Taking it one day at a time, that is all we really can do while living with chronic pain.

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