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Old 03-15-2010, 11:17 AM   #1
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still in pain/meds not working any longer

brief history

I had my first back surgery in 2005. Two level fusion PLIF with appliance. L4 L5 - L5 S1.Second surgery 2006 to have the appliance removed. Have been seeing a pain specialist for almost two years now and had my last films done a year ago 2009. New films show increased arthritis and more degeneration on my disc above the fusion site. Current meds are Embeda 120 mg per day and Hydro 10/325 for breakthrough one 4 x per day. I have been on this regiment for over a year now and it is becoming non effective. Is my pain getting worse or am I building up a tolerance? I have my doc appt this Weds and was going to recommend trying something different but not sure what will work? I have been told that the hydro with the acetaminophen in it is not good long term? Not sure what to ask for next?

 
Old 03-15-2010, 10:16 PM   #2
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Re: still in pain/meds not working any longer

Hi Deisinger, I would assume your seeing a pain management doc if your taking embeda. Alll you need to do is report how your feeling, functioning etc. Let them know your in more pain and let the docs decide if they need to take another look at your spine or make a med change or adjustment. He has lots of choices when it comes to meds, and he/she should know what those choices are. If he doesn't then I would suggest finding a new doc that does. If you need to educate a doc on his own specialty something is wrong and asking for specific meds can come across as seeking behavior and can thow up red flags to some docs. That's not something you really want to do.

If you have never tried anything else or a particlur med, their is no point in getting it stuck in your head that oxycontin or duragesic or morphine without the antagonist is the med you need. Nobody here knows how you will respond to any med. Personally I don't want the doc that's a soft touch and will give me anything I ask for, I want a doc to know what to do if I tell him my pain level has changed or I have new or returning symptoms.

I did read a quick description of Embeda, and one of the things they pointed out was to inform your doc if the med loses it's effectiveness. It could be a physical change in your condition, It could be simple tolerance, or you may have reached the max capability of a med that contains naltrexone which blocks opiate reception. The only way to find out is to report your condition and go through the diagnostic process and trial and error. If he really doesn't know what to do, find a new doc.

If your not seeing a PM specialists then find one and give him a chance to work with you. Your only job is to acurately report and describe your symptoms and effectiveness of treatments and medications. If you are in too much pain to wait untill your next scheduled visit then call the doc and ask if they can squeeze you in. Most PM docs aren't going to make med changes over the phone and you certainly don't want to start self medicating and run out of meds early.
Welcome and good luck, Dave

 
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Old 03-20-2010, 08:52 AM   #3
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Re: still in pain/meds not working any longer

Quote:
Originally Posted by Shoreline View Post
Hi Deisinger, I would assume your seeing a pain management doc if your taking embeda. Alll you need to do is report how your feeling, functioning etc. Let them know your in more pain and let the docs decide if they need to take another look at your spine or make a med change or adjustment. He has lots of choices when it comes to meds, and he/she should know what those choices are. If he doesn't then I would suggest finding a new doc that does. If you need to educate a doc on his own specialty something is wrong and asking for specific meds can come across as seeking behavior and can thow up red flags to some docs. That's not something you really want to do.

If you have never tried anything else or a particlur med, their is no point in getting it stuck in your head that oxycontin or duragesic or morphine without the antagonist is the med you need. Nobody here knows how you will respond to any med. Personally I don't want the doc that's a soft touch and will give me anything I ask for, I want a doc to know what to do if I tell him my pain level has changed or I have new or returning symptoms.

I did read a quick description of Embeda, and one of the things they pointed out was to inform your doc if the med loses it's effectiveness. It could be a physical change in your condition, It could be simple tolerance, or you may have reached the max capability of a med that contains naltrexone which blocks opiate reception. The only way to find out is to report your condition and go through the diagnostic process and trial and error. If he really doesn't know what to do, find a new doc.

If your not seeing a PM specialists then find one and give him a chance to work with you. Your only job is to acurately report and describe your symptoms and effectiveness of treatments and medications. If you are in too much pain to wait untill your next scheduled visit then call the doc and ask if they can squeeze you in. Most PM docs aren't going to make med changes over the phone and you certainly don't want to start self medicating and run out of meds early.
Welcome and good luck, Dave

:madmad:
ok well I had my PM appt on the 17th. However I had them switch office locations because I had moved to make it closer. The nurse starts asking me if I had been to see my Nuro??? I said what???? Was I supposed to? That information was over a year old!!! So I proceed to talk to them about tolerance and maybe switching my meds. So I get the deer in the headlight look from the nurse and she says "well I dont want to increase your current dose but lets try Opana for long term meds. I say ok your the doc. Well first off it was hard as hell to find a pharm that had the med. Secondly the cost for one month was almost $500.00. Can you freaking believe that. I mean I have insurance but my God!!! Ok past the sticker shock I started my first dose and the next day started going into withdrawals. I had a very important job interview that day and I pray I didnt blow it because of this. I am so ****** off because the doc said that I would not suffer any withdrawals. So I am traveling 3 hours to this interview....my back is freaking absolutely insanely killing me because of the long drive...I call the Doc office 8am tell them what going on and all I get is a call back. Well there office closes early on Fri so there would be know way to get there in time so they leave me a message telling me that if a med change is needed I need to make another appt ($40 co pay) and bring in all my meds. Know I have been burning through my breakthrough meds like crazy because the Opana is not working and is making me sick. The Hydro seems to take the edge off. What do I tell them why so much of my breakthrough is gone and how do I get them to listen to me?????

 
Old 03-21-2010, 03:16 AM   #4
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Re: still in pain/meds not working any longer

Hello deisinger. Have you ever tried oxycontin. It's cheaper and it works. It works for MOST people.

 
Old 03-22-2010, 06:31 AM   #5
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Re: still in pain/meds not working any longer

No, that has not been offered. I am going in this morning luckily they had a cancellation. A little empathy would go a long way. If things don't go any better with this visit I will start looking for another doctor. But in the state I am in Tennessee, it is very hard to even find a PM doctor because our state has one of the highest abuse rates. I just want a generic for long term and break through that works. You would think that after one year of treatment they would know that the lortab would start being ineffective....I have to take at least 60 - 80 mg for relief...my dose is set at 40mg a day???

 
Old 03-22-2010, 10:39 AM   #6
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Re: still in pain/meds not working any longer

Hey Deseigner, I understand feeling that the doc should do something. Of course he should. I've been in PM since 93, I have 3 failed fusions and broken or pulled the screws out of every single set of hardware. This is medicine, It's not like your acountant did his math wrong. Docs are trying to protect you from fatal consequences by over estimating a drug you have never tried during a conversion from one med to another. Your last post said you are only allowed 4 lortab a day and that was your biggest concern. You long acting med is the mainstay of your PM plan. That's the med that every doc stuggles to find the right dose and always starts low. BT meds shouldn't acount for more than a 20-30% increase only when needed.

The charts called equianelgesic guides show docs a conversion and the three I have sen have all been different. These are still just estimates and most say here is how you calculate the conversion and to be safe start at half of what you calculate. You expected instant relief for a car trip and interview the next day and want to change docs if he doesn't get it right today. I hope they have hundreds of PM docs in your area that you can be that demanding too. I don't know what dose of Embeda you were on or how much naltrexone is in each mg or how long it takes to get all of that opiate blocking drug out of your system, This is your first experience with LA meds and you think the problem is the Norco. BT meds shouldn't be more than 20 or 30% of your opiate intake on any given day. And if you take 4 a day every 6 hours, they have simply become part of your routine and wouldn't do a thing when actually have increased pain. Like when someone who has had back surgery has to make a stressful and long car trip to an interview. You really think it's the docs fault?

It's very likely that if you simply went from one dose of embeda to a dose of Oxymorphone you still had naltrexone in your system and no opiate would have provided the relief it would normally provide when someone hasn't been on an antagonist for a long period of time. That first day could have been nothing but pure withdrawal due to the naltrexone still blocking your opiate receptors. I don't know how long it takes for the opiate antagonist to leave your system in this long acting form and honestly don't to care to read the full prescribing info.

I've changed meds at eleast 8 times before having a pump installed almost 7 years ago. BTW I still use the same BT med I used back then. 6 months, 1 year, whatever doesn't mean your doc should be volenteering increases unless your complaining aboput increasedpain or shorter duration of the med working. I started with oxycontin switched to Kadian, to methadone, to duragesic back to Kadian back to methadone then to generic LA morphine back to to meth and back to la morphine parly due to efectiveness but mainly cost of these meds. Before medicare had part D 3 -4 years ago. Kadian or duragesic would have run me 1400-1900 a month without any insurance,.I was disabled, unemployed and waited 20 months to get for SSD after my 3rd faiiled fusion and the last was L1-S1. 6 levels. I still crunch and squeck and at best I get 50% pain relief with allows me to work part time and take the 4 hour ride to see my family every couple years.

My doc never started where I left off when switching back to the exact same med but I always knew he would continue to work with me until I reached the level I needed. Your doc is working with you, You just came off your first LA med and your ready to leave because it took 4-5 days to get you back in after a change? Good luck finding better care.

Your expectations just sound rediclous although I can sympathize having to do the car ride and interview while going through differential withdrawal. My docs are one of the few doc in the area that even manage pumps and although my end doses may sound way more agresive then yours when you here about 600 mgs of morphine and 30 mg oyicodone tabs, But no responsable doc is going to start you there. Docs look at cross tolerance and the holiday away from entirely different classes of opiates and opioids and will start you on a lower dose than you took at an earlier time.

My docs have no problem titrating to an effective dose, That means slowly and safely adjusting the meds untill you reach max benefit with tolerable side effects. When they swithced me from orals to the pump of they started me at 2 mg per day of intrathecal morphine. I couldn't afford another $800 for the cheapest generic version of morphine so I stopped that within 5 days of having the implant. It took 16 visits over 6 months to get my dose titrated to an efective dose, around 12 mgs a day. I was started at 1/6th of what I needed but I didn't get mad and lok for another doc, I called my doc who know I would be needing some type of adjustement right of the bat. Then he wasn't comfortable with the morphine concentration due to the risk of developing a granuloma at the tip of the cath in my intrathecal space because Morpine isn't as soluable as fentanyl or dilaudid, so they switcched me to dilauid which took another 2 months and 8 adjustments. I figure I pay my docs who are the specialist to know the little things like conversion from drug to drug, the risk of granulomolma when you exceeed 25 mgs per ml of morphine. All the things you and I don't know or may have simply read about someone elses experience.

It's not the docs fault that you decided to do a major med change, particlualarly a med that contains an opiate antagonist the day before a job interview hours away from home. Naltrtexone is basically the same thing they use to bring heroin or opiate overdoses back from the dead "Narcan". It purges and blocks opiate receptors. Using combination opiate agonist
and antagonsit has been succesfull with some other meds like Stadol,Talwyn NX, Nubain, and Suboxone and aren't new to pan management, but LA morphine and naltrexone is one of the newer meds that's been aproved.

It sounds like the nalrexone has a limiting effect as far as how much relief your going to get, but you or the doc doesn't know till you try. If a doc gets a conversion or creates a cocktail that relieves your pain on the first attempt. That probably puts you in the 2% club and very possiblly a few mgs a way from being too much.

You would be doing yourself a huge favor if you reset your expectations a tad and realized nothing your doc has done has been the slightest bit questionable. The fact he is squeezing you n today is more than some people have the luxery of. If you keep changing docs or seem unreasonabale in your requests, you become the problem patient that nobody wants. You also have to realize it took most of the people on this forum months if not years of trying dozens of meds and combination of meds, procedure after procedure to get to a point where their pain is tolerable let alone thier able to work.

God luck and I hope your doc gets you one step closer to helping. Dave

 
Old 03-23-2010, 02:48 AM   #7
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Re: still in pain/meds not working any longer

hey hello to you again deisinger, I hope things are getting better. The fact you live in tennessee doesn't make any difference, you have a legitimate pain, you know what it means? it means you won't take narcotics for fun, you would take it to control or hopefully to get rid of the pain which honestly ruin lives of many people.



<edited: inappropriate>




I would look for another doctor who will increase your medication cause yours doesn't want to do so. Everyone is different. I've seen here people in this board who are using the same dose of narcotic for years, even my doctor told me. He has a patient who is using oxycontin 20mg for 5 years already.
Oxycontin 20mg did NOTHING for me right from the start. I started with 10mg oxycontin which seemed to work great than after couple of weeks it didn't work so I asked my doctor to increase and he increased it to 20mg and that did NOT work either but 40mg worked. So I just warn you about that. You will need first to find the right dose. But than also you might need to increase in time. There is nothing to do when it comes to narcotics. But that's the only thing that really helps or take the edge of chronic pain.

Honestly, what I would recommend that works, is that you would try percocet5 and if that doesn't work you can switch to percocet 10/325 together with oxycontin 10mg, don't start on a high dose. That's what doctors usually start with from what I understand.

All the best for you and I hope you will feel better!

Last edited by Administrator; 03-23-2010 at 10:42 PM.

 
Old 03-23-2010, 07:41 AM   #8
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Re: still in pain/meds not working any longer

Well I showed up in the throws of withdrawal and they change my meds (both generic) to morphine sulphate for LA and oxy for BT Yay!!! I feel so much better today.

 
Old 05-03-2010, 10:08 PM   #9
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Re: still in pain/meds not working any longer

try neurontin or gabapentin

 
Old 05-26-2010, 10:56 AM   #10
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Re: still in pain/meds not working any longer

I'm glad to hear they changed your meds. Morphine sulphate did not work well for me for very long for me though I was on them for a long time at the same dose. Initially though I had no pain at all for 2 weeks. How nice that was!! Embeda recently had a 2nd recall. Nasty drug anyway. I hated it and it's so new there isn't enough information on the safety and experience anyway. I was so uncomfortable taking it and had really strange side effects, likely from the recall as mine were affected. Doc just switched me to Opana. We shall see. Good luck to you!!!

 
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