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Pain pump dosage increase time

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245

Comments

  • memerainboltmemerainbolt IndianaPosts: 3,432

    The next time you go ask her if your refill date is programmed in with the use of your bolus. Your refill date should only change when they increase your meds as well as increase the bolus. That means you are using more so your date will change.

    I won't know anything about the catheter until I go see the neuro and we don't have that date yet. I have a MRI Friday and blood work.
    Take care and hope your family starts feeling better.

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • Jason - They should be able to increase you pump 10% each visit and my doc would turn it up weekly. However I do have a couple questions for you. Did you continue to take your meds during the trial period? Also, are they now starting to lower your meds to get off oral meds altogether? The reason I ask the difference my be your oral medication. I had my pump for roughly 8 months, then due to complications it was removed in June of this year. Actually I got an infection after about 5 months which my doc agreed my body was trying to push the pump out of my belly and it adhered itself to my skin (it moved a lot) I still wish to this day that we didn’t need to remove the pump! It was the greatest thing since sliced bread for me. Best of luck.

    Michael

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  • jbowerjbower wisconsin Posts: 31

    I'm sorry to hear that Michael, that would suck to go through all of that and then have something that worked and then have to have it removed. That's just no good.

    About my oral meds, I stopped taking them during the trial because I wanted to see how the pump was going to work. Then when the put the permanent one in I was still taking them for the first week after surgery due to the surgical pain. Then I stopped taking them after the one week follow up to again gage where I was at.

    I didn't start taking them again till yesterday because it's just not doing anything really for me yet. Keep in mind though I'm only 3 weeks in from when I had the surgery and only at 1.00mg a day on morphine.

    Now that you mention it they actually didn't mention anything to me about stopping or cutting back on my oral medication. I'll have to make sure to ask at next week's appointment.

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

  • jbowerjbower wisconsin Posts: 31

    Sandra, my refill date is programmed in the device to give myself the bolus dose. She made sure to tell me that because she said I will be the only one who will know my true refill date because it will tell me on the device. She said to keep an eye on that because if it gets too close then I will need to schedule a refill appointment. That's why I don't think this is working right because the date started to get earlier and then went to later and then back and forth to now it doesn't change. Something funky is going on with it.

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

  • Jason - thank you, yes it was a rough decision to have it removed but after taking oral & iv antibiotics with the infection not going away there wasn’t any other choice. Have they turned on your bolis on already? My doc didn’t turn mine on until I was off oral meds completely. What size unit did you get the smaller one or bigger one? Has your unit beeped at all? It does have notification beeps if something is wrong and he unit isn’t functioning properly.

    Michael

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  • Jason and Sandra - I will mark this and comment when I can. I may be able to offer a little advice. You both were lucky, during my trial period hey set my unit to a very low dose and I ended up getting spinal migraines, ugg. They weren’t fun at all. You both seem very detailed and I’m sure you have reviewed the little booklet that came with you pump. Hopefully Jason they will hit your sweet spot soon and get your pain under control.

  • jbowerjbower wisconsin Posts: 31

    Michael, yes my programmer to give myself bolus dosages is turned on. This is what I was referring to about thinking it's not working correctly. It's programmed to show me my next refill date on the screen but the date kept going up and down. It started at Jan 8th then went to the 7th then 6th then back up to the 8th and stayed there a few days. Now it shows the 7th.

    My last appointment I met with a different PA and she asked if the other doc mentioned the numbing medication and I said no. She believes I will benefit from that. She said if this adjustment along with the programmer doesn't provide good relief then my next appointment she will put the numbing medication in along with Dilaudid and go from there.

    I'm confident after seeing her that we will find the right mix of medication and dosage soon.

    So since they had to remove yours what are they doing for you now? Does that mean you are going to have to take oral meds now for the rest of your life? Can I ask you what was your pump treating?

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

  • memerainboltmemerainbolt IndianaPosts: 3,432

    I still take oral meds for breakthrough pain. I'm hoping if they can move the catheter and put in the bupivacaine I'll be alright.
    Last year at this time I was on complete bed rest. At least now I can get up and move around.
    I'm not giving up on the pump yet, it's still better than it was.

    bidbearner
    Thank you so much for your insight on this. This is one area where we have no members, except me and Jason.
    We appreciate you being here.

    Happy Thanksgiving to you both and your families.

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • Jason - I agree I’m sure they will find the correct dosage for you. There are so many things they can do with the pump. Yes I am on oral medication and will need to take for the rest of my life, I have DDD in my entire spine, nerve damage In the entire lower half of my body from a failed L5-S1 spinal fusion. I also have nerve damage in both arms, from shoulders down. I just had a cervical fusion of C5-C7 and 1” bone spur removed at C3. L3&L4 are also herniated as well as T2-T3, I’m somewhat a mess! I have been bed ridden all summer, the pump had my pain under control but wasn’t telling my body what was wrong. Therefore when it was removed my issues were exposed. I want to say I was at 1.77 ml each hour, would need to look back at my paperwork to confirm. Also, since they removed the pump my doc left the catheter in, which has caused spinal fluid to constantly leak causing major spinal migraines. I couldn’t agree more to your signature “take it one day at a time....”. Hope you both had a great thanksgiving!

    Michael

  • I've had a Flowonix pain pump now for almost four years. I started with morphine, my doc increased it to almost 9 mg before I moved and therefore had to change doctors. My new doctor was flabbergasted that I was at such a high dose of morphine and still feeling no relief. She changed it to Dilauded, and I am presently at almost 8.5mg. it took approx. 3 yrs to get here, going to the doctor once a month for fills. I am currently researching what other medications that can be used because I realize that being on such a high dose and not getting good relief is just ridiculous. I was genetically tested and told that I have a particular gene that causes my body to rapidly metabolize medications which makes getting pain relief a problem. I am also waiting for Flowonix to release the 40 ml pump, so I don't have to go for fills every month.

    I read another post that a gentleman had a bad reaction to having Fentanyl in his pump, but that's the medication that I am leaning towards, simply because when I was on the Fentanyl patch I had some success. Unfortunately, I had a doctor who's line in the sand so to speak was 75 mcg. I am told that intrathecal Fentanyl is stronger so I have high hopes that it will work in controlling my pain.

    I realize (more so after reading these posts) that it takes awhile to titrate to a dosage that actually works, patience is key if you have a pump, that and breakthrough meds to help keep you at a a relatively decent level, pain wise.

    I was wondering however if anyone knew of a medication other than, morphine, Dilaudid, or Fentanyl that can be used in a pump?

    I pray that all are having a low pain day so that you can enjoy your Thanksgiving. God Bless!


    Laura J.

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