Dilaudid Pain Pump (Page 3) (Top voted first)

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I would like to talk to anyone who has a pain pump with Dilaudid. My mother has a pain pump and I am worried she will be on it for the rest of her life. She has had the pump for many years and I feel it has affected her greatly. She had to have all her teeth pulled because they were rotting and she also has a problem with her tongue burning and red all the time. I am worried she will never get off the pain pump because she is addicted... she also falls asleep all the time even while you are talking to her. Thanks for any advice.
Teresa.

74 Replies (4 Pages)

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26

I have had my pump since Nov 4 with dillaudid. I'm only up to .2154 per 24 hours. I also have a remote that will deliver .21 every 4 hours as needed. No side affects except for problems urinating a little. I have been told that since the meds don't go into the blood stream .

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27

Teresa I had the same pump for nine months same symptoms and other problems . I finally. Had it removed I was going crazy and even tried to cut the pump out by myself. I would have bled to death but I called the surgeon . And now I am very happy with pills .now I control the medicine. Not the pump

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29

I have been on a pain pump for 18 years. I'm currently on my third, but my first one actually came from the doctor who designed the pain pump. It's probably the worst thing I've ever done. I wasn't ever able to stop the oral meds completely. I wish someone would have warned me about the long term side effects of dilaudid. My memory is just gone. It went on vacation years ago and never returned. My teeth are going bad, but who has any money left after seeing my doctors? I'm 37 and I live with my parents because I can't work. I think the pain meds are causing me more pain. I'm also very frustrated with my pain doctor. For some reason he can't understand why I want to get off the pump. I just found out that pain doctors trained in the last five years don't use them unless it's and end of life situation. I know it will take time because my dose is 7mg a day. It was at 10 before I came to my senses. I'm really scared because I need TMJ and jaw surgery in a month. I'm very happy it works for some people, but the long term side effects of the dilaudid can be worse than your original situation.

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30

You need to go to dr with her and talk to dr. She is on to high of a dose. Even if she still has pain as all pain is not treatable. If she is falling asleep after having the pump for that long she is on too much

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31

It's just the manufacturer is the one who put the writing on the pill.

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32

Hello, I have been in a study which the doctor has replaced the morphine in my pump with the Hydromorphine Hydrochloride. I too am sick every day, depression is setting in, still have chronic pain. Seriously thinking about titration off of this drug, and getting the pump removed. Where my pump Cath is inserted in my spine shows a bulging disc, and curvature in my spine. I'm not very happy, asked the nurse if anyone else in study was experiencing nausea, she told me no. I'm the only one having problems!

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34

Your mum may experience arm and dry mouth so she could find some medicine that will help over-the-counter for patients with dry mouth due to taking specific medications but her teeth snapping come ruined just because you're taking the medication if her teeth are being priced in florist in them in the mouth rents you may have some issues because of the dryness but you should not lose out of your teeth just do you to with their medication

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35

I'm on my third pain pump. I'm currently on 5 milligrams of dilaudid a day but have decreased it from 10 milligrams a day. It was my choice to turn down the pump because I felt it had very negative side effects. I recently had reconstructive jaw and joint surgery and my tolerance was so high I had to be placed on methadone and dilaudid around the clock.
My surgery was performed in a different city from where I live so I had to use a pain management doctor from the hospital. They put me on so much pain medication in addition to my pump the doctor was shocked that I was still breathing without assistance. The terrible thing was my tolerance was so high they couldn't completely take care of my pain. Luckily I have face off all of my p.o medications. But my body is so out of whack from long-term narcotic use that any minor pain I have my body registers it as intense pain. I have also delt with many years of depression due to my central nervous system being suppress from the narcotics, at least in my opinion. I've had major problems with my teeth because I can't tell when there is pain in them. I suffer from bladder problems because of the medication. I've also learned new pain doctors don't use pain pumps unless it is an end of life situation. My deepest desire is to get off my pump completely, but unlike most of the posts I've seen it was my decision. I just can't live like this anymore. There have been so many advances when it comes to treating pain sense my pump was implanted 18 yrs ago. I now concentrate on meditation, yoga, exercise, acupuncture, strength training, and stretching. I will probably always have chronic pain problems but I'm more afraid of what I missing out on than being off the pain medications. I think everyone should make their own decisions when it comes to being on narcotics long term, but I feel there are other ways to deal with pain that doesn't include medication.

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39

The coverage of pain via dilaudid in the pump is similar to IV but lasts much longer because the pump delivers the medication on a continuous basis and uses much less medication to cover the pain than IV. MY PUMP WAS initially filled with morphine but i opted for dilaudid instead because the side effects of morphine were too intense for me. I want to know how long the pumps last? I have a Codman 3000 since 2006. Do these pumps ever need to be replaced? Its been my God send to live as close a normal life as possible. It seems like it's not working right. Pump or catheter issue? I have permanent nerve damage in my c-spine nerve roots and make my arm and shoulder feel like it's being sawed off like the soldiers in the civil war days had to endure before anesthetic was invented.

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40

I have had a pain pump for about 8 years. There is 3 kinds of meds In it morphine, dilaudid and fentyryl but still in terrible pain. Wanted the pump taken out and the Dr said I am addicted now and couldn't survive the with drawls so what do I do? Now he has a new drug that is suppose to take all the pain away but I would be the 3rd pe son he has giving it to. So what do I do. Ant replies

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41

I am new to the pain pump and the Dilaudid usage. I had it installed on 2/18/16 and as of 7/10/16 I am at 4.5 mg in a 24hr grace period. I was on 100mcg Fentanyl patches every48 hours not 72, and I am still on 15mg Oxycodone three times a day. They have been going slow with the pump since I have been having other health issues. I feel like the Dilaudid dosage is not enough. When I am hospitalized they give me 4 mg IV every 4 hours and it barely helps the pain when I am at my worse. I guess what I am asking is what is an average dosage per hour or daily of Dilaudid? I appreciate any and all advice!!!

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42

I have the pain pump. And I started with Dilaudid and now I'm on Fentanyl. I have had the pump for about 15 months but when they changed it to the Fentanyl. It seems to take most of the problems your talking about away. And my doctor said that I will have it the rest of my life. You have to decide if you would rather you mom be in pain or on the pump. I'm only 44 and have never even taken a aspirin but after I got deathly sick due to an illness and had surgery. I have chronic pain. I.would rather live addicted to a pain then live in pain constantly. That's what I think.

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43

I have a pain pump that has Dilaudid in it for many years. It does not the same as if you take the drug orally. Mine drips into T10-T11. It's used for chronic lower back pain. She is not feeling any effects from this. There must be something else she is taking to cause those symptoms. I have had my pump implanted over 9 years with no symptoms whatsoever. There is more going on. You need to find out what else she is taking.

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44

It depends on your dr. He can write it in a way where insurance should cover it. Talk to your dr. Since he prescribed it, he should be able to write it in the correct way. Whatever you do, DO NOT STOP THE MEDICINCE. You need to taper off

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45

If you are on Dilaudid through a pain pump than you don't have to worry about it getting to any of your organs. The medication in a pump goes through a catheter into your spinal fluid. This is the main reason that the pain pump was created in order to prevent damage to kidneys, liver and any other organs. Your pain specialist doctor should have explained all of this to you even before you started the trial pump. Plus, you should have been given a video to watch along with all literature. I have had my pain pump made by Medtronic (most are) for 3 1/2 years and briefly began with fentanyl but switched to Dilaudid. I have bivipuvine as well. The Dilaudid is for my rheumatoid arthritis, osteoarthritis, degenerative arthritis and fibromyalgia and the bivipuvine is for my neuropathy nerve pain in my feet and hands.i would speak to your doctor for any concerns because usually, most people who have my kind of diseases never get off of the pain pump. It is permanent and so much safer than oral medication

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46

If you have an intrathecal pain pump then the pain medicine is going into the spinal fluid and by passes all other organs. Didn't your Dr explain it? I did a lot of research before I got mine.

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47

You have to have the pump replaced every 5 years. Unless you experience any problems such as mucosa or necrosis around the pump area under the skin. I have had mine for 2 2/2 years, a Medtronic and I was told that the pump will need to be replaced every 5 years.

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48

Maybe what is really needed is to re-evaluate your medications. May you need to change from dilaudid to a combination of other meds. I have had my pump for almost 10 years. It's from Medtronic & gets replaced every 7 yrs. my pump gets read every month when I go in for my appointment to make sure it's working properly & have enough medicine till the next appointment. My dr also gives me a printout of all the medication that is in the pump, the hourly & daily amount used, when the next fill date will be & also how long the pump will last & when it needs to replaced. With continuous monitoring, the pump is very efficient. Not to say that there are days where breakthrough pain happens & that's why I also have oral medication. I never had an issued with my teeth either. I see my dentist every 6 months & never has he said that any of the medication in my pump or I take orally has had an effect on my teeth.

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49

I have a pain pump with dilaudid 0.7999, on a continuous drip since 9/2014. My pump is a Medtronic II.
I find that even though I have had stomach probs for many years, my stomach hurts much worse, and because
my body can only tolerate less than 1 mg, I highly question if it helps at all.
Ihave had chronic insomnia for yrs., but never this bad. I believe the Dilaudid is the cause.


My pain management dr., who follows m1 has attempted to increase my dose several times, I have had.to ask him to decrease.the teeny dose I can barely tolerate. My pain is
9-10 all the time.
Many times I have wanted to have it removed, but he
swears he has seen marked improvement since he put it in.
I have been 85% bedbound for 16 yrs., with over 50 surgeries. It's her choice. Pumps can be removed. I had 2 Medtronic 1 pumps removed from my back due to problems.
Remember no matter what the dr. thinks, your mom will always know her body.
She has to tolerate the effects of how she feels 24/7.
Whether she decides to keep it is up to her. Do her side effects make her life better? Is the pump really helping at all?
Maybe she needs the dosage changed. Maybe the meds in her pump need to be changed.
Morphine was put in mine, even though it waas in my chaart prior to surgery that it made me deathly ill. Hence, the change to Dilaudid.
I'd ask if her physician if she just one, or several meds in her pump, and definitele be closely followed by and stay in pain management until all issues aare handled satisfactorily. And above all, drs., even the good ones, aren't aalqaays right.
For me, the true comfort I receive comes from God. And whenever I have done my best and still can't figure things out, I ask Him for His will be done. I'm almost 70 and He has answered every prayer I've ever prayed.
I will keep you in my prayers, and hope that, if only one word, some of this feedback will help you. May God bless you from this day forward. Be well.

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50

The ikTylenol put in with th pain meds is an agonist with the pain meds. In other words, the Tylenol increases the analgesic effect of the pain medication. The two meds together provide better pain relief.

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