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Old 11-26-2007, 09:04 PM   #1
Join Date: Nov 2007
Location: new zealand
Posts: 8
debsdebs HB User
help re first step to pump and clock meds for all opiates dave you spoke to me last y

I am in new zealand and was badly treated by a doctor who did blind tests, one was now i hear an alfentinil test. he said that morhine type drugs were no good for me as i didnt respond to a dose he gave me. I had been taking these meds for 7 plus years,
This doc in the pain clininc also threatened me made me take all clothese off wih no gown blanket or nurse and so it went on
to the end they put me on huge doses of fentnyl i couldnt keep out of hospital and they said i had wind up.
It has now been proved again that i have idiopathic pancreatitis caused by a gallbladder op 8 years ago, i have had feeding tubes etc. he basically ran atop of all my specs and said i did not and tried to take away my meds.
I was referred to auckland and the clinical director there said the test was rubbish and was appalled, he said it was not right to stop emergency treatments at the hospital and he and my specialists got in touch with our health commisioner who is the highest authority in our land he ruled that they must come up with a pain treatment emergency at hospital acceptable to me.
I have for the last year suffered, and many times thought of dying rather then bearing the pain which is excruciating, any liquid or anything you eat causes more pain.
heres where i need help, I also sufered a head injury and now have to meet with the clinical director of pain ( nice) and the head of anesthesia as the problem hospital to work out a pain plan emergency acceptable to me this will be on the 4 th december.
On the 3rd i go for the first meeting with the pain team a physio and a beviorist psych.
the clinical director favours putting a morphine pump in.
this would be the first in the country for my condition and from the hospital i was at.

the health commisioner has also said he will continue action against the first anesthetist who treated me badly, he wants the mergency pain path in place. basically yhey can prosecute the hospital, and he has been told i have been deteriorating by my mum who has helped me stay alive.

the new guy also clinical director said you work out whhat and how much oxy you need and ask for it
he said take that and the break through and divide by equal slots in day and take by the clock not your pain. which i dont understand why he would do????
so i have been taking 50 mg bd oxy long acting and every three hours taking 60 mg BT up to 480 BT a day.
The problem is he says dont take it when you have pain only by clock but when i eat it spirals out of comtrol and i cant stop pain i need to take break through like it should be taken not by clock.
i dont understand why he has done this.


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Old 11-27-2007, 01:07 PM   #2
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slipperyslope HB User
Re: help re first step to pump and clock meds for all opiates dave you spoke to me la

I am sorry but I don't understand your post as it doesn't make a lot of sense to me. I read it 3 times and I am not sure what your asking for.

I agree with your DR to take your pain meds by the clock and this means at set times every day!!!! same time each day... NOT by when your pain flares. this will work much better than having to get your pain under control before it spirals out of control. your on a very high dose of BT meds. you said your taking 480 mgs a day of oxycodone IR? That should be covering your pain very well, plus the morphine your on should be helping you. Perhaps you need a new type of pain medication if your still having this much pain on a high dose already.

I don't understand what you meant by saying the Dr made you take off all your clothes. what does this have to do with your pain condition? I am sorry I can't be of more help but I don't understand your post and what you need.
I don't understand what " wind up" means. can you explain? Maybe because your from NZ your lingo is very different than in the US? What does this mean
"pain plan emergency" It sounds like to me you need to go back and see your Dr and bring someone with you that can be a secound set of ears since you don't understand most of what he told you and why you are to take your B/T meds every certain amount of hours vs waiting until your pain flares out of control. A Pain pump is used as a last resort when all other pain meds and modualities have failed... you seem to have a long ways to go before you have a pain pump put into your body. Have you read up on what the pain pump is and how it works? I would not be so quick to have one implanted in me when they have never done them in your state. This is not a smart way to handle things as you need an experienced Dr to do this as it is not something they just stick in you. there are protocols you have to take before you can have one put in. Ask more questions and bring someone else with you that can help you understand what your Dr is trying to tell you. A pain pump is a not something to be taken lightly. Have you tried Methadone yet? It is a very good pain medication. There are several other pain meds you would want to try before having this pain pump. Its a permanent thing. perhaps you need to read up on and it and get more opinions.


Old 11-27-2007, 09:40 PM   #3
Join Date: Nov 2007
Location: new zealand
Posts: 8
debsdebs HB User
Re: help re first step to pump and clock meds for all opiates dave you spoke to me la

Originally Posted by slipperyslope View Post
I am sorry but I don't understand your post as it doesn't make a lot of sense to me. I read it 3 times and I am not sure what your asking for.

I am asking for information on taking meds by clock ie all breakthrough instead of when you have break through pain. Yes I am taking 480 mg of IR and yes when I eat it is terrible . My pain has not been under control for almost 3 years,
It started with a swedish doctor forcing me to take all my clothes off eg bad behavior that was my first visit then blind tests then taking my meds .. I am just trying to get it down in a nut shell.
The morphine pump is the last resort I have already had nerves severed 8 years ago to help and it did but I am not going to get much more back intil I have the pump, and it is the last resort. The best pain relief I had was a intepleural catheter that took local where they numbed my side, the first time pain free for a day.

II don't understand what you meant by saying the Dr made you take off all your clothes. what does this have to do with your pain condition? he was negligent and so is being
I don't understand what " wind up pain (eg from the nerves") means.
He told me to take the IR BT by the clock not by the pain and that to me seems bizarre

"pain plan emergency"
that means that when i have an acute attack I can got tothe ED for treatment for the pancreatitis like anyone else right now the doctor who was negligent stopped all that.

. Have you tried Methadone yet? It is a very good pain medication.

Yes no good, and ketamine was average didnt like side effects, morphine, fentanyl patches were good but are too expensive they were best with breakthrough oxy.


Old 11-28-2007, 02:17 PM   #4
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Re: help re first step to pump and clock meds for all opiates dave you spoke to me la

Hey Debs, I remember ya, I think the docs are using the idea that with a constant serum level in your system it's easier to keep a high level of pain in check than to deal with a high spike when you have no or little in your system. Taking it by the clock just maintains a constant levelin your system. However the next school of thought is why not maintain that constant level with the long acting meds and use break through or rescue medication as needed. In the US most info on the long acting meds suggest that if you taking more than two doses of rescue or short acting medication a day, your long acting dose should be reevaluated and the bulk of short acting converted into long acting.

The long acting 50 mg tabs your taking, basically sustain half their mg strength. so 50mgs sustains 25 in your system. It seems if you have to take an additional 60 mgs up to 8 times a day, and if you do this every day, why wouldn't they convert that to long acting so you don't have the ups and downs that short acting meds create. 12 hour dosing is a stretch for any long acting oxy we have, most folks take it every 8 to prevent a large dip in serum level or increase in pain between the 8th hour and 12th hour. The only reason not to convert it all to long acting is if you have lots of days where you don't take the max amount of short acting. If you have days where you only need it once or twice a day, converting it all to long acting would leave you over medicated when you didn't need it.

It sure seems like there could be a better middle ground as far as your long acting and short acting though. The short acting releases all 60 mgs in that 3-4 hour period, when you combine it with the 25 mgs the long acting sustains, you basically have 85 mgs in your system around the clock. 160 mgs or 2 80mg pills 3 times a day would be a total of 480 mgs. You wouldn’t be taking more mgs, just have a more constant level in your system. Perhaps your docs could find a compromise and convert half your short acting into long acting and give you a little more control over your BT med as needed.. When your taking that much short acting, it really becomes what your need on a daily basis and then for ER visits you need to exceed that by at least 20% to make any significant difference.

I know the short acting is cheaper than the long acting, But with that much short acting, the long acting is less than 1/3rd of what you take daily. Most docs and manufacturers in the US are doing the reverse and using BT meds as 1/4 to 1/3 of your daily dose. Rescue meds are such a small part of my daily routine I can skip days at a time and not experience any withdrawal. If you stopped taking short acting meds, you would be a sick puppy. So why not try to even out the ups and downs while trying to stay ahead of the pain. It's easier to keep pain in check by clock dosing than to bring a high level down when you really hurt. That's the idea, but some docs do rely on short acting more than others and some docs only want you to use short acting sparingly.

Everything I have been taught or told by my docs is to maintain the serum level with long acting and use the short acting sparingly so that it doesn't become part of the daily routine that you eventually become tolerant too.

Honestly it would be a 180 degree turn for your doc to put the bulk of your dose into long acting and allow you something strong enough when you need it. Obviously your long acting dose isn't strong enough or you wouldn't need that much short acting medication that often. 450 mgs isn't shocking to me, it's just the way it's being given that seems strange. However I'm not foolish enough to try to change a docs belief system when it comes to how to prescribe. If he thinks this is the best way, as long as you're getting relief, I wouldn't fight too hard for something you haven't tried.

As far as the pump, although your doc thinks your morphine resistant, which is a crock, Oxycodone is in the same family as dilaudid / hydromorphone. In fact 20% of oxy breaks down into hydromorphone. Oral dilaudid simply isn't as effective as it is IV or in a pump, It isn't metabolized as efficiently and doesn't cross the blood brain barrier as efficiently, But intrathecally it's very effective. I've tried oral dilaudid myself and wasn't at all impressed although it was the drug given IV after every surgery and worked fine. Some drugs just don't metabolize as well when taken orally and dilaudid is one. You may find you do well with it in a pump, it's what’s in mine and I have no complaints about dilaudid in the pump. I still use oxycodone orally for break through pain as it seems more effective orally. A little in the morning when I get up and usually in the evening or at night, but dilaudid in the pump sustains me fairly well through the day.

Gotta run, I’m so glad you have things moving in a positive direction. Spending the rest of your life half sedated on Ketamine isn’t much of a life. I don’t know if that upset you last year, but I can imagine it would get old. I do hope they develop a solid ER plan for those attacks, but there is plenty they can do with your long acting and short acting combo. Perhaps the ketamine can be part of your ER plan as that seemed to help last year.

Take care, Dave

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