Narcotic Pain Medicine

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CrohnsPatient
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Date Joined Feb 2008
Total Posts : 314
   Posted 5/5/2011 5:47 AM (GMT -6)   
Hey I'm wondering what other people take to control their pain only in terms of Narcotic pain medicine. As of right now I take 60mg oxycontin three times a day or 90mg twice a day, plus I take 30mg instant release oxycodone and I take up to eight a day. It controls my pain really well more then enough when I'm not flaring. When I am flaring and I'm admitted to the hospital I get exactly what I take while at home, plus I get 6mg of IV Dalaudid every 2 hours. PCA pumps tend to not work as well for me, or if I get it to where it works then I need a significant amount more then if its just pushed like in the ER.

I've tried things in the past, I've been in pain management for 5 years, and I've tried Methadone, Opana, Oxycontin, Fentynal patches, and I'm definetely sure I've had more I just can't remember what else.

I'd like to know what others are taking and at what doses and what they have tried that has worked.

Betsey Ross
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Date Joined Mar 2011
Total Posts : 1056
   Posted 5/5/2011 6:28 AM (GMT -6)   
chris

Everyone reacts differently to narcotics and what works for one person may not work for another. I have tried butran patch 10 mg they didnt work then opana er 10 mg that didnt work . Then exalgo 8 mg and that doesnt last 24 hours like it is advertised. I am popping vicodin 10-600 like tic tacs breath mints one every 4 hours. it will be interesting to see if the pain clinic differs in the dispensing of meds vs my internal medicine doc that is trying to help but it isnt working.

When you talk to a doc about pain management you tell him that your medicine isnt working for you and what do you recommend. Never tell the doc which pills you want himto dispense.

Keep in touch

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/5/2011 6:55 AM (GMT -6)   
I never would tell my doctor what I want or what dose. Although with the relationship I have he would not mind whatsoever me suggesting trying something as a matter of fact the few times I have bourght up going back to a medication from the past he's agreed and thats what we've done.

I know not everything works for everything and espeically not the same I'm trying to get a feel for if Ive skipped a medication that could work for me.

Many medications dont work as long as advertised. Oxycontin says 12 hours, although for me its more like 8 to 10 hours. which is why I take it 3 times a day and not 2 or I'd be going up and down in pain control.

You should ask about how much tylenol your taking...That is quite a lot of tylenol to be taking espeically if your taking vicodin every 4 hours then thats probably well over 4grams of tylenol on the liver.

Jim1969
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Date Joined Jul 2009
Total Posts : 2042
   Posted 5/5/2011 7:05 AM (GMT -6)   
The only two oral medications I have tried that really work for me at controlling my "normal" pain is morphine and dialudid.

I used to take 15 mg morphine sulfate IR ever 6 hours as needed. Most of the time I only needed three per day. I had to stop taking it though due to having memory problems.

I now take 6 mg (one 4 and one 2mg tablet) every 8 as needed. It works as well as the morphine did as far as pain reduction. The big difference I notice is that for me it does not taper off as slowly. I get 4-5 hours of good relief with it but then boom my pain comes right back in a hurry. With the morphine I got 4-5 hours of good relief but still had some relief after 6-8 hours. I only wish my doctor would approve a 6 hour as needed RX for the dilaudid.

So far, knock on wood, I have not had any memory issues at all since being on my current medication and I have been on it for nearly a year which is about the time period I was on the morphine when I started in with the memory issues.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Backpain Sara
Regular Member


Date Joined Apr 2011
Total Posts : 30
   Posted 5/5/2011 9:38 AM (GMT -6)   
I was on Oxycontin 40mg 3x day and felt it was too much and then went down to 60mg and I usually take 40mg in the morning and 20mg in the evening and sometimes I take 10-20mg Oxycontin for BTP. My Dr. won't even give me instant release meds. I used to take 30mg Ms Contin 4x day then after two years switched to Oxycontin 120. The pain never goes completely away though does it? That's why I tried the lower dose of Oxycontin because I find Oxycontin depressing for me and saps my energy. I really don't think MS Contin or Oxycontin lasts 12 hours like it's supposed to either. Take care. Sara
Chronic back and leg pain. Degenerative disc disease for 3 years and unable to work since injuring my back. EMG/nerve test shows peroneal sciatic nerve is being irritated from L4-L5 disc area. Meds-Oxycontin, Cymbalta, lyrica, flexeril,Wellbutrin, Oxazepam for sleep. TX-facet joint, trigger point, nerve block and epidural injections every year x 3 years with temporary relief only. Did PT.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 5/5/2011 11:01 AM (GMT -6)   
Hi CrohnsPatient and welcome to the chronic pain forum. From what you have listed in meds that you have taken previously I think you have tried all of the heavy hitters. I am somewhat confused in your scripts of Oxycontin you are talking about, is your dr actually giving you two different scripts one for 60mg and another for 90mg. It does seems like you are on a good bit of Oxycodone, 240mg a day. I have crohns and understand and can relate to the pain all too well. I was on both Oxycontin and Oxycodone for BT but not near the amounts you are on, in fact one of the reasons of going off of it was it just tore my stomach up. I am not sure what was the worst of the two evils. Have you had any resection surgery? I don't know what meds you are on for the crohns, I am currently on Humira, Imuran, Endocorte and Lialda. I was on Remicade for 3 1/2 years and had to stop because I built up antibodies to it. I think Humira has done a better job controlling things if thats possible over the Remicade. I sure like the convenience of a shot over spending one day at the hospital every 4 weeks and then being sick for 3 days after each infusion.

Anyway, I wanted to pop on and tell you welcome to CP forum. Like I said, I think you have done all the heavy hitters and cannot think of anything else to add to the mix. Take care and keep us posted on how you are doing.
Moderator Chronic Pain Forum

Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 11:45 AM (GMT -6)   
Morning all,
 
First, I don't agree w/ the "don't tell your doctor what to dispense".  I mean - I don't go in w/ my order written out, by any means.  tongue   But I have a good, solid relationship w/ a prominent PM doctor; he respects me because he knows I research things.... have been through just about everything.... and so forth.  So, yes - I do go in with "suggestions" - and he actually really respects that.
 
I've been on just about everything - including all the heavy hitters, at very, very high doses. (But this has been over...ummm...8 years now).  I've been on even higher doses of oxy.  To give a perspective, when I found out I was pregnant - I was on a total of 480mg of morphine a day PLUS massive breakthrough meds.  It was a nightmare.  I've been on dilaudid, fentanyl patches, oral fentanyl (lollipops) and on the list goes.
 
When I'm flaring, too - I get about the same w/ dilaudid - either via PCA or injections. 
 
Now, I'm at 45mg 2x/daily of morphine - I'm proud that I've made it down that far.  But I have a major arsenal prescribed for those flaring moments, including 8mg dilaudid and oral fentanyl.  I have that to "try" to keep me out of the ER.  Ultimately, I may end up w/ a pain pump - but trying to delay that for as long as possible.
 
Love, Tina
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/5/2011 12:17 PM (GMT -6)   
 
 
        Tina, I think as a general rull of thumb, and especially with the fear factor these Dr's have these days, it is wise to first let the Dr' suggest what may be the best course of action to take after the patient has explained that the current medications are not working well enough.
 
     However here, like all things, there are exceptions to the unwritten rule of thumb, and many patients like you do indeed have a very honest and open relationship with their PM and or PCD. This usually comes after a very long period of time, treating the patient, with no trust issues popping up during the corse of treatment.
 
      So I do agree with both points of view on this issue. It is a case by case decesion that needs to weighed by the patient. I myself would and do err on the side of caution, even with my Dr who trust what I'm shareing with him. I always let him ask me first what I think I need to be comfortable. He does not always agree, but in the end we get there, and respect each others view. I'm suffering. and he understands that. He is the Dr, and I respect that as well.
 
       Good stuff!
 
           SE
Moderator Chronic Pain Forum

Weekly Quote!
"When the character of a man is not clear to you, look at his friends."

Post Edited (Screaming Eagle) : 5/5/2011 11:36:35 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 5/5/2011 12:37 PM (GMT -6)   
I have had many different types of drs tell me when a patient asks for pain medication by name the red flag goes up immediately. The only way it would not happen is if that person has been a patient with the dr for a very long time. Sometimes the drs will open the door for the patient to ask for something in specific, but rarely does that one happen. Usually I have seen this happen when discussing what the person has or has not tried. That one is a real fine line to walk to keep from getting in trouble with the dr. I don't recommend it unless you have a good relationship with your dr and have been his/her patient for a long time.
Moderator Chronic Pain Forum

Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 12:50 PM (GMT -6)   
Love you Mikey.... but I disagree, but I ALWAYS put the disclaimer that these are my own personal experiences.  Period.  I think there are too many people that go in - freaked out to speak up - and doctors DO sense that.  I mean no disrespect.
 
I've had all those horrendous experience that have been listed here on the board.  So it's not that I don't get it.  I've had PM doctors HATE me and refuse to treat me appropriately.  I really do speak from experience and I DO know the climate out there surrounding PM, the DEA and so forth.  I've lived in two different states w/ vastly different approaches.
 
But once I stood up, educated myself.... things turned around for me.  I KNOW fully well that's not going to happen for all.  But I think it's completely appropriate to go in and let a PM doc know what has worked, what hasn't and so forth.  Again, I even stated that I don't think anyone (me included, of course!) should go in w/ their "medication order".... we do go to a doctor for their "expertise" and should listen to what they suggest for us.  But - even though this is not the PC way of thinking - our doctors work for us.  If she/he is prescribing something that doesn't work/we've used before w/ no success and so forth - what good is that going to do??  You have to speak up!!
 
I guess I just don't believe in being ruled by fear - even despite the current climate of pain management out there.  Doctors feel that and pick up on it.  I've said it before - I can be a shy person that will go just along w/ the crowd.  But, IMHO, that just doesn't work w/ PM.  Too many go in...to afraid to share all their symptoms and ask specifically about using particular medications.  (Side note - there are always going to be drug seekers....but we can't let that get in the way of advocating for our PM needs!)
 
It's ok that we differ in opinions (any of us) - I still love ya - and, again, mean no disrespect w/ my differing opinions :)  And to everyone - these are just my own thoughts and experiences...not medical advice - just my opinions!  Please follow what you think is best for you and your own situation.
 
In love, of course!! --Tina
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 12:59 PM (GMT -6)   
Ok.... so I'm alone in my opinion - and that's ok :) lol
 
Just one more clarification and then I gotta move on.... I didn't mean to walk and say - "Hey, please give me 90 oxy's".  That wasn't my point by any means.  But I don't share the belief that if you go in....and in the midst of discussion - say - "Hey, I've tried vicodin and it wasn't working.  Percocet helped some.  What about trying "xyz"?".
 
I'm sorry - I hold to that position - again, just for me and my personal experiences.  If you don't have that kind of doctor....then by all means, DON'T do that!  (But, to me, then I would seek another doc that will listen to your input, because, really - you ARE the patient).
 
This isn't the first time I've been on an island by myself in my opinions...and that's ok :)  I can handle it!  Ok, gotta run.
 
Love, Tina

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 5/5/2011 1:08 PM (GMT -6)   

 

         its all good my friend! smilewinkgrin   Carry on, just don't let it happen again! LOL  smilewinkgrin    

             SE wink


Moderator Chronic Pain Forum

Weekly Quote!
"When the character of a man is not clear to you, look at his friends."

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 1:24 PM (GMT -6)   
Ok, I've been reprimanded..... I'll try yeah
 
:) :)  See ya guys later.... --Tina

fish29
Regular Member


Date Joined Apr 2011
Total Posts : 70
   Posted 5/5/2011 2:44 PM (GMT -6)   
Hi,
I am on morphine now with Savella, Neurontin and Baclofen.
Have been on diludid, oxy and everything else you can think of. I have a spinal cord disorder as well as something like fibro.


There are of course other medications out there- such as ketamine.

Is your doctor concerned about the high doses or not? Personally I am on 60 IR morphine and 135 ER daily.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 2:56 PM (GMT -6)   
Just asking this for further education.... but is ketamine really used as a means of pain managment??

I've been on every pain medication on the market.  Honestly.  In various doses.  I DO know they use ketamine in certain cases; there's been stories told that it can "reset" pain receptors and so forth. (and I know we've had a couple members here use it for unique situations).

That being said, I'd personally be scared to death to use it.  I have a huge tolerance to meds - takes about 3 to 4x the "normal" dose for me... and even w/ that - the ketamine thing scares me.

But is it really being suggested as a means of normal pain management??
Again, just curious. 
 
--Tina
 
 
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/5/2011 3:58 PM (GMT -6)   
Straydog...

Do you not remember me? We used to talk years ago lol. Thats ok if you forgot about me.

No he doesnt give me 60mg and 90mg I dont believe they even make a 90mg pill if I remember correctly, they do make a 80 and I'm actually thinking that that is the highest single pill that they happen to make. Anyway I get 60mg pills AND 30mg oxycontin, then I get 30mg oxycodone. Yes it is a lot of instant release, but the reason he does this is because I dont ALWAYS have to use these instant release...and in that case he doesnt want to replace it with something control released that I'd be on no matter if I needed it that particular day or not.

I have had resection surgery. I've had Crohns Disease since september 2002, and my first surgery was late 2004 I believe. And at that time it was removal of 1/3 of my colon, the descending portion. Then sometime later, I believe off the top of my head somewhere around a year to a year and a half later(2005 or so) I had the rest of my colon removed(2/3's) which left me with an illiostomy, supposedly temperary. Then in april of 2006 I believe it was I had done a M2A study, or the pill capsule camera, and I guess I had a narrowing or blockage because it was supposed to pass within 3 days or so if I remember correctly, well 7 days later it had not passed and I was vomiting and had stomach pain although I did not put the two and two together, while I was in there my GI had one of his associates do a endoscopy on me and another scope that just went just inside of my terminal illieum of my stoma so just a couple inches because it obviously wouldn't even fit more then that. Well later a few hours later when my surgeon came by the pill capsule camera had in fact passed...but what we did not yet know is that from the GI blowing air into the terminal illieum he had caused 3 perforations, he basically had to do this which I understand, to be able to get the camera to have enough space/room to pass through the terminal illieum.

Well my GI was going out of town at the time on vacation and would be gone for literally a month. At this same time a few weeks prior he had been trying to get me into see an IBD specialist, first at UVa which wouldn't accept my medicare and medicaid(which in my opinion is flat our ridiculous... also my opinion if your a teaching hospital or affiliated with a university you should by law have to accept medicare and medicaid... especially when your the University of Virginia and then won't accept Medicaid which is run BY STATE OF VIRGINIA!), and since I couldn't get into UVa, he had got me an appointment with an IBD specialist GI in Richmond, Virginia, the capital, at VCU Medical Center, Virginia Commonwealth University at their IBD Clinic. Which I'm completely happy that I could not get into UVa now because I love VCU and the staff and my doctor. But because my local GI was going on that month long vacation he informed me that he didn't think that any GI in the area could really handle my case, on a normal bases more or less when something like this was going on. So after 6 days in my local Regional Medical Center he got me transferred to VCU Medical Center about an hour and a half away in Richmond. Which is where I met my GI that I use now for the first time. They found out that I had the 3 perforations, and I explained how it most likely happened, they agreed with my assessment and they took me to emergency surgery, have you this is a couple days after transferring because we didn't right away know about the perforations until we started to notice small amounts of air in my abdomen. But they took me to emergency surgery. Removed about 29 cm of my terminal illieum which besides the holes actually had a significant amount of disease in it, which is also the first time knowing that I had any disease outside of my colon and rectum. I ended up being at VCU for 15 days total, plus the 6 from my regional medical center, so I was in the hospital a total of 21 days, which still to this day amazes me I didnt go crazy LOL! And obviously at this same time of the 29 cm being removed they also replaced my illiostomy, so that was the second time having an illiostomy placed.

I've also had literally twenty-five to thirty rectal abcesses. And also my first signs of Crohns Disease happen to be a rectal abcess. I've also had one abdominal abcess, but only one, which actually kept growing so fast that it popped itself. The rectal abcesses of course I could not be so lucky, had to have every single one of them drained... first one I had drained in the office with local anestetic, after that the surgeon told me that he was sorry and no way would he do that to me again, so everyone since that very first one has been done under general anestesia because it was just to painful for me, mainly because most of my disease process was always in my colon and rectum.

Right now medication wise I take Methotrexate, Prednisone, protonix, b-12, vitamin d, iron, cipro, fagyl, theyre about to start me on cimzia also.

Ive tried things in the past like budesinide(entecort), 6mp, remicade, humira, imuran, asacol and pentasa(which for some reason I dont know about other people experience but I NEVER respond to any of the anti-inflammatories) I'm sure I'm forgetting like 10 different medications.

Also right now because the hospital caught that I have something in the same 'class' or 'family' as tuberculosis Im finally home but I have to take IV antibiotics for another 21 days while at home giving them to myself. One is by mouth, two are by IV, one I have to mix myself, and one that is even on National Shortage. They sent off my cultures to the CDC to determine exactly what kind of bacteria it was. They believe it was brought into my body somehow that has something to do with my Port. So they also removed my port and I'm using a picc-line as of right now for the antibiotics. Like I said I have another 21 days of the IV antibiotics one of the IV ones is done every 6 hrs and involves 2 different bags of antibiotics that I have to mix myself and run back to back, then I have another that is just once a day. Not to mention the one by mouth which is 4 times a day. Then at the end of all these IV antibiotics in which 21 days will have past... then the real fun starts of by mouth antiobiotics for atleast a year. So for the forseeable future I will be tethered to a pole and then a slave to the antibiotics.

I hope this tells you a lot of what you wanted to know straydog. I didn't know you don't remember me. Although I have not posted in quite a long time, maybe over a year even, I just assumed you remembered me because I remember you. I used to use Skinsfan1229 years ago also. If that helps you remember any.

Thanks for everyones input I really appreciate it.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/5/2011 9:19 PM (GMT -6)   
When I asked my PCP for pain meds I just told her no codine or any of it's stronger cousins-because I am really sensitive to it.
And then let her come up with a recomendation.

My Rhuematologist wants her patients to tell her what they want if they have a preference or something that has worked before. Including how much they want. If it isn't medically counterindicated she will write what you want. I don't think she cares at all about the current political climate surrounding pain management.

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/5/2011 9:41 PM (GMT -6)   
lol wow, I dont even know what there is on the market that weaker then codeine I thought that was like basically the weakest, first line of defense type medication. I guess tramadol would be weaker. Ive never been able to take any of those though, they wont touch any of my pain and i'd have to be taking massive doses and still not get relief.
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