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Intolerant to most pain meds and IN PAIN

stockbrokersstockbroker Posts: 464
edited 06/11/2012 - 7:32 AM in Pain Medications
"Gosh. I am s-o-o-o-o lucky" she said, sarcasm dripping from her every syllable. I have a damaged L5 nerve, suffer chronic pain and am intolerant to most pain medications. The only drug I can take with NO side effects AT ALL is Dilaudid. Recently, I had a spinal cord stimulator implanted and while it helps my pain a good deal, it is not the be-all and end-all I had hoped it would be, which is to say, I will not be able to wean off of my meds completely. It turns out, it is really unusual for people to be able to get off of their meds with a SCS. I was so disappointed, I actually slipped off the precipice upon which I've been balancing, and fell into depression. I had, however, been able to reduce my Dilaudid from 8mgs 4X day to 8mgs 3X a day. I guess that is something. I mentioned to my PM doc that a few days, I was able to get by with just two doses of Dilauded (or total 16mgs.) The PM doc, like others before her wants to get me on a long-acting drug. I have tried Oxycontin, Avinza, Fentanyl, and Kadian. The first two made me very, very nervous, almost panicky. The Fentanyl made me nauseous. The Kadian was the best of the lot but I did develop severe abdominal pains which were attributed to the Kadian. My current PM just put me on Opana ER, saying it was a long-acting Dilaudid. When I went to pick up the prescription, the pharmacist asked me about it, because oxycontin and oxycocone are listed as medications I can't tolerate. My research tells me Opana ER is more closely related to these two meds than it is to Dilaudid. So, I took the 10mgs. of Opana and 1. I felt nervous and 2. it did nothing for my pain. Additionally, this doc prescribed Dilaudid 4 mgs. for breakthrough pain. I don't see how that's going to do the trick. When I was trying to wean off the drugs, I got down to 8mgs Dilaudid 3X daily and tried to go to 6mgs Dilaudid 3X daily and the 6mgs didn't cover my pain. I surely see the benefit of a long acting drug but if all of them give me bad side effects, what is the harm of just staying on the Dilaudid, from which I have NO side effects. I feel absolutely normal except my pain is relieved. Is Opana like long-acting Dilaudid? My body doesn't think so. Any thoughts, comments re: Opana ER and re" 4mgs Dilaudid for break through would be appreciated. Susan.


  • hi, im no dr or nurse, nut have experience with pain meds. i believe diluadid is hydro-morphone and opana is oxymorphone, you can get both in er and ir forms, for me the oxymorphone is a little stronger than hydromorphone. just like oxycodone (percocet) is slightly stronger than hydrocodone (vicodin). i hope this info is helpful and you get conyinued relief. remember always get med advice from your dr. your treatment depends on it.
  • Most PM doctors prefer long acting pain medications as the base medications because there is not the constant up and down blood plasma levels that come with using shorter acting pain meds, like dilaudid, vicoden, percocet etc.
    Nervousness is not necessarily a "bad" side effect unless it becomes disabling, considered more of a nuisance than one that prohibits taking a certain pain medication. Almost every medication out there in the market and in development has some side effect to it, many of them have a lot of side effects and it becomes a matter of learning to live with the side effects, waiting for them to subside some and they usually do once you are on a steady dose for a period of time, or if it is unbearable, then stopping the use of that particular med.
    The other issues with the other medications not relieving your pain is probably , in large part due to the low dose of them. With a change in any medication in PM, doctors use a conversion chart, taking your daily intake of medication, and then converting it to the new type of medication, dividing it into how many doses per day you will be given, and then reducing it a percentage for cross tolerance issues. Medications will need to be titrated up or down , to see what dosage will cover your pain needs, while minimizing the side effects that you experience.
    Opana is a good medication, and once you have been titrated to the correct dosage, you may find that it offers you similar relief to what you are getting with the dilaudid.
  • Thanks for your comments. After a day on the new program, I think its going to work. Between the small dose of Opana (10mgs) the small dose of Dilaudid (4 mgs) and the stimulator, I seem to be doing okay after all. I guess my doc knows what she's doing. Imagine that! Thanks again.
  • oxymorphone (14-Hydroxydihydromorphinone) is more derived from morphine while oxycodone is from codeine (14-hydroxydihydrocodeinone).

    Kadian and Avinza are both morphine just one is 24hrs and 12hrs respectively.

    hydromorphone (dihydromorphinone)is also derived from morphine.

    Fentanyl (N-phenyl-N-(1-phenethyl-4-piperidinyl)propanamide)is actually not derived from any natural opiate but is synthesis from 4-piperidinone hydrochloride.

    So if one of the morphine relatives gives you problems you would usually switch to the codeine and so forth. If the morphine relatives give you different side effects for each pill but not the same it must be some other inactive ingredient that they use in the pills/patches.

    Maybe a little too technical but I studied chemistry for a long time and thought I might try putting it out there.
  • im pretty sure that oxymorphone and hydromorphone are two different meds. diluadid is hydromorphone and opana is oxymorphone, thats from the manufacturers info packet.
  • Sorry the stim isn't working like you thought it would. Everyone wants to see the best scenario take place...one with no need for medication. I will be having a morphine pump installed soon, and even with that I was told I still will need oral medication. I probably will get off the the MS Contin gradually and keep taking the oxycodone for breakthrough pain.

    It's also a good thing that Opana is helping you now. As you know, there has been extensive debate about whether or not it works. Some people think it's worthless while others say it helps with their pain.

    I did switch from Fentanyl 100mcg to MS Contin 180 mg's daily, and I know the dose was calculated a little below what the conversion chart says to take. I'm sure it was for safety reasons because I never took this much morphine before, only in injection form from a hospital for various reasons. So far I tolerated okay, but it doesn't last the full 8 hours in between doses (3 pills a day).

    Hang in there, and I hope the Opana does the trick. Take care
  • I've actually spent quite a miserable weekend. The Opana feels like I'm taking Nothing and the 4mgs of Dilaudid is half of my usual dosage. I've got my stimulator cranked up but I've slipped back into that dark place called depression. She started me out on 10 mgs of Opana for two weeks and then I'm to go up to 20mgs after 2 weeks. How am I to live with the pain for the first two weeks. I don't get it.
  • Very sorry to hear that. I have been through that myself. It took me a couple months to get to the right dose of Avinza with perocet for breakthrough pain. I was miserable. Started on 30mg and now take 90. I tried doing the lease amount of work possible, and laying down whenever I could. I even threw in some anti-inflammatory but nothing seemed to work until the avinza dose was right for me. Good luck and hope u feel better soon. I did notice someone post earlier that avinza was a 12 hour med??? Mine says its a once a day and thats what im prescribed. Am i confused on this?
  • Like you, I'm intolerant to pain meds...well to almost all meds really. What I've found is that my body really needs longer to adapt to the medication being introduced in most cases. How long are you giving the meds? Is there a way to start out slow and work your way up into a stronger pain med? Perhaps this would help broaden your possibilities.

    Just a thought,
  • The doctor is starting me out on a low dose: its 10mgs Opana ER for two weeks and then 20mgs. My problem is that the 10mgs is doing squat for my pain and my usual Dilaudid has been cut way back so now I'm almost always in pain. Since I recently have become pretty significantly depressed, this increased pain is very hard to deal with.
  • I wish I had an answer. I have started to post, but just don't know what to say.

    Maybe I'm a bad patient, but when I was left in pain and being undertreated I just called EVERYONE and whined a LOT...but that's just me...we don't want you to get discharged from the doctor.

    The problem is that you may need the slow up ramp to get used to the med. To much to start may have you not tolerating it at all. Can you try to see if the doc will agree to let you take the larger dose of dilaudid you were taking?

    I know this is next to no help at all. I wish I had kept that magic wand I used to believe in...

  • I also agree with Wrambler that you should call your doctor and tell him what's going on. You shouldn't have to suffer for 2 weeks until starting the 20mg- and what if the 20 mg doesn't help either? Remember JWM? He is really good at explaining how Opana works or doesn't work ;) I hope this isn't the case, and that the higher dose helps you out. I don't recall what exactly is it about Opana that some people find so unreliable. Anyway, see if your doctor will let you go back to the 8mg of Dilaudid for BT pain until the Opana kicks in. I'm sorry you're going through this and I hope things work out.
  • dilaurodilauro ConnecticutPosts: 10,059
    For starters:

    Hydromorphone, a more common synonym for dihydromorphinone and dimorphone, commonly a hydrochloride (trade names Palladone, Palladone SR, Dilaudid

    Oxymorphone (Opana, Numorphan, Numorphone) or 14-Hydroxydihydromorphinone is a powerful semi-synthetic opioid analgesic.

    Some text books will indicate that Oxymorphone is about 6 times stronger than morphine, but without the problems associated with morphine.

    In my personal experience, there are many factors that can determine which pain medication is the right one for you.

    I was on Oxycontin and Oxycodone for almost 2 years. After a while, it started to lose the overall effect for pain reduction, but did increase negative symptoms (stomach problems, itching, etc)

    My doctor switched me over to Opana (ER and normal), now just the normal. Initially, the impact was very big, addressed all my pain concerns without any negatives. Now, (9 months later), still no negatives and helps manage the pain levels.

    Narcotic pain medications is something that you and your doctor should work hand in hand with. Your body can easily adjust to one type so the effects are not as great. So, switching things around could be the right action, but that is something for your doctor to identify.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • If it ain't broke, why fix it? If I was doing so well with the stimulator and Dilaudid 8mgs 3X day, why did it have to be changed. Now as the change is taking place, I'm barely going to work, am a solid 6 on the pain scale (as opposed to a 0 or 1-2) and--this part irritates me the most---I have to leave messages for the nurse who (I assume) talks to the doctor and then calls me back when I can't be reached. Do these people think that all we do is sit by the phone, holding our breath and awaiting their phone calls. "Oh please be him, it must be him or I shall die" (I'm trying to quote to lyrics to a song sung, I think by Peggy Lee). First, the doc said I could increase the Dilaudid from 4 mgs three times a day to 8 mgs twice a day. Today, I called and LEFT A MESSAGE regarding the bioavailability issue. I got a message back from the nurse that did not
    address the bioavailability of Opana but told me I could go ahead and up the dosage of Opana ER from 10 mgs 2X a day to 20 mgs. 2X a day while once again reducing my Dilaudid to 4mgs 3X daily. Oh, and the doctor is gone until Monday. What do they think we do while they are phutzing with our meds???????. I am in pain. My business is suffering. My depression worsens. What was wrong with taking the Dilaudid 8mgs. 3X day. A long acting med would be better but the dose I was taking was working w-a-a-y better than this. And she's out until Monday......
  • The only thing I can think of is that doctors prefer us being on long acting meds, and that they'll raise those first before they'd raise the immediate release ones. I wish they would do something for you, but most of all listen to what you have to say. Is there a way to reach your doctor through the answering service?
  • any updates on how u are doing now or whats going on?
  • Sorry to hear you are going through this - I'm surprised that your doc would change meds if you were able to control the pain before...

    Thinking of you my dear!! >:D< >:D<
  • that your body has become tolerant to so many of the medications. I went through that over a period of years and also developed allergies to many of them, so I am left with straight codeine (in order to take high enough doses to ease the pain, I can't take it with the acetiminophen) and injectible Demerol (Meperidine). Now that I am on Methotrexate, the Demerol does not mix well with it and I end up vomiting after injections, despite the anti-nausea drug injected WITH it.

    It is extremely frustrating when you are so limited to what you can take for pain and breakthrough pain; I do hope you come across something that will work for you and last long enough to give you some relief. Keep your chin up!!

  • Sorry everyone. I haven't even been checking the boards. Really depressed. Sunday, though, my husband dragged me out of bed and we went for a hike in the woods and, for a little bit, I felt better. As for my pain meds, my PM doc finally is letting me go back to Dilaudid 8mgs. 3X day. She says she'll re-think my situation before I see her again July 10th. So that part is better. Now I have to accept that I have tried every possible therapy, surgery, device and none has given me my life back. I must somehow learn to accept this. Its a struggle--a struggle that is being played out in my bed as I can't seem to muster the energy to do anything (except go to the office a few times a week.) Yikes! Susan
  • You are feeling this way too. I got one hope left then I expect I will be joining you in a pity party. Not that depression is a party...

    My SCS seems to be unfriendly to my pain. it is staying away from it ! I buzz and tingle all around the pain, but it does not mask or cover it up.

    I'm seeing my PM tomorrow and hope we can get me some better programming. But I am real nervous as every setting I have found that works stops working in 2-3 days. I think my mind is rejecting the scs signals instead of the pain. I am so not doing good.

    I do not see any options either should we not find a program that works.

    Gee, I doubt if I am cheering you up! A hike in the woods sounds nice. I have a 3 day weekend coming up too! Hmmmmm, good idea! Hope you feel better soon!
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