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Dilaudid dilemma

If any of you have been reading my recent posts, you know that I am having severe uncontrolled pain right now after my morphine pump failed after 10 years because of a granuloma blocking my catheter. That was at the end of Oct and I've been truly struggling ever since then while my dr tries to find an oral drug dose and/or combo that can make me comfortable until the granuloma is dissolved and my pump put back in action. Apparently it's very hard to make that cross over from pain pump drug levels to oral doses. My pump was at a very high level of morphine even by pump standards, so finding the equivalent oral dose has been a real dilemma and thus far unsuccessful. We first started with 60 mg ER (extended release) morphine every 12 hours, along with 60 mg immediate release morphine; having no success, next we moved the ER dose to every 8 hours, still along with the IR (immediate Release) morphine. When that didn't work he increased the the ER to 100 Mg every 12 hours and changed from IR morphine to 30 mg oxycodone every 4 to 6 hours, then he next increased the 30 mg IR morphine to 60 mg. The oxycodone was terrible. I never got any relief with it and it made me extremely drowsy too. This week on Monday the Dr continued me on 100 mg ER morphine and changed from 60 mg of oxycodone to 8 mg dilaudid -1 every 4 to 6 hours. The dilaudid wasn't doing anything so he increased that to 2 pills (1 every 4 to 6 hours, followed by a second tablet taken 2 to 3 hours after the first). That's really not doing much either and I'm so frustrated and in so much pain, I could scream. Dr tells me to be patient that dilaudid sometimes has delayed effect and takes time to build in your system. He wants to see me on Monday again to discuss further options.
My question is has anyone on the forum ever heard of this problem with dilaudid taking some time to be effective? I'm willing to be patient (what choice do I have), if I know there's a chance it may eventually work. But im having serious doubts. Love to hear from anyone whose had these issues with dilaudid and what happened in your situation.


  • I have been on dilaudid for about 8months now, maybe a little longer, and while I am having issues with that and my ER morphine covering my pain. I am on much smaller doses than you but my drs won't increase my doses even though I constantly tell them I am having increased and not well control of my pain. Anyway, from both my personal experience and medical knowledge, dilaudid is about 4x stronger than morphine however it is quite short acting meaning it has a small half life and is typically out of you system in about 4-5 hrs. It is very possible that you are very tolerate to narcotics so you may need higher doses. Also remember that even IR pills don't go immediately into ur system like IV and pump meds do. I know first hand how horrible it is to sit around and deal with pain.
    Best of luck, hope you are able to get ur pain under control.
  • Are you taking any muscle or nerve meds too? I don't know if there's any science behind it but, for me, narcotics or muscle relaxants alone don't work nearly as well as the right combination of the 2. I also find that generic morphine works much better for me than branded MS Contin. I know they're supposed to be exactly the same but I've found a lot of difference between manufacturers of meds, branded vs generic. I'm a weird one but my doc says its not that uncommon. Some brands give me cramps & stomach problems increasing rather than decreasing my total pain levels.

    I've never heard of dilaudid taking time to build-up & work, quite the opposite....
    Osteoarthritis & DDD.
  • Doug HellDoug Hell Posts: 335
    edited 02/24/2015 - 4:19 AM
    If I had it my way and things weren't dangerous, I'd be on huge amounts of every narcotic under the sun combined with dilaudid in an attempt to take away ALL the pain.... Now back to reality -- The problem is that you build a tolerance to EVERY single narcotic, regardless of the dosage, hence why you are going through exactly what you're going through right now. The answer is other means of pain management combined with narcotics.... I'm sorry, but no dosage will ever be enough. And I agree with Englishgirl. With my experience taking dilaudids, it is the opposite of what your Doctor has stated.

    I wish you all the best with respect to your pain levels, but I think we ALL need to focus less on the narcotics and more on the safe means of pain management.

    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • dea-lynnddea-lynn Posts: 152
    edited 02/25/2015 - 2:24 PM
    Not to say that using other means of pain management can't be useful and I'm not trying to bash Doug, but what exactly is one supposed to do when you have tried injections and PT and such and it doesn't work? Also, how can you exercise or do yoga when you are in pain to the point that even moving sends you to tears? Now that being said if anyone has suggestions I would love to hear them cause I believe I'm just about at the end of my rope, here. Also, he comes my venting....

    Had my follow up with my PM office yesterday following my MRIs, and despite my new and increasingly worsening symptoms I'm told that they were both 'normal'. I told the PA that while I am not a doctor I can read images well enough to no when something off,now maybe its because i am looking for something specific and that's why I'm seeing stuff, but anyway, I said that if nothing is wrong could ahe please explain why I'm having an increase in headaches, numbness in my arms and hands, severe dizziness both if I'm up longer than 4 hrs and when I first stand up, feeling like I'm going to pass out, severe pain at the base of my skull into my neck, increase in severity of back pain, and numbness in right hip. She said to further discuss my neuro symptoms with my neuro tomorrow. When I mentioned that again my meds wernt helping to adequately control my pain still, she said "we are not a high wiseacre pain clinic, and that they won't keep just uping my meds( im not taking high doses), but that she could rotate my meds out and try something different". She suggeated Methadone which I said I scared to get on, then she said "your afraid of methadone but not higher and higher doses of morphine and dilaudid". That made me kinda mad, but what happened next down right pissed me off, to the point I seriously concerded walking out and finding somewhere else. So she continued asking about meds like IR Morphine instead of Dilaudid, or Oxycodone morphine made me itch horribly the last time I was given it IV but didn't work well, and Oxy works ok but not great and also made me itch. After this she had the nerve to ask if I was dependent on the meds or felt they were becoming a problem, which made me angry. She then said she was going to talk to the dr, when she came back in she had 2wk script for dilaudid 4mg every 8-12hrs (I was on 2mg every 6hrs) and morphine ER was kept at 30mg every 12hrs. When I started to say that there wasn't much increase I was cut off with before you were allowed 8mg/day now you cam have 12mg/day. I was then told that if this isn't sufficent thwn I will have to change meds around. Before I left I told the PA that I was unhappy that I am suddenly being treated like an addict, or like I'm doing something wrong when I do everything exactly right. The only thing that kept me from withsrawling from their care today was the fact that she appoligized.

    Maybe I'm just upset and speaking from amger and frustration but I think that I have the right to be treated with respect and receive the care I deserve. I dont feel that I'm on exsobanant amouts of medication.

    Thays all for mow, thanks
  • The truth is that nothing is going to take away ALL the pain. The answer certainly isn't to put yourself in a near comatose state to take it all away, only for that dosage to ultimately wear thin. In the end, people die when they abuse these drugs. That goes without saying and the statistics prove it. We're dealing with dangerous medications here that can do more damage than good in the long run..... Doctors are monitored very closely. Patients are monitored even more closely. There are strict rules in place for a reason. Unfortunately, the abusers make it tough for the legitimate cases and as a direct result, the Government is required to rule with an iron fist.

    My advice to you is to keep your head screwed on right. Do not walk out. Do not give them a hard time. If you do, you may find that it isn't as easy as you think to just walk out and find a new Clinic. They could very easily rinse themselves of you. Do not be naive. They ARE documenting your behaviour. There's a reason she asked you those questions... Perhaps to see just how you would react to them. Remember, all eyes are on you, the patient. Believe me when I tell you that you are not in control here; they are. Save your rants and your frustration for us. Vent here.

    We're all in the same boat here, Dea Lynn, just on different levels. The idea is to find coping mechanisms and to incorporate pain management techniques that work for US as individuals. Have you ever read "The Blend?" Please do:


    That's what this forum is for. If you need to vent, fire away. Hopefully someone can provide you with what you need. We all have our days. I too sometimes feel like I'm at my last wits end... Recently I received some bad news from my legal team. I have no choice but to endure the unknown for the next year as the laws in my country stop me from moving forward until then. Going back to work is not an option right now (or ever in that industry) and in the back of my mind, all I can think about are my 2 young daughters; the ultimate victims here..... I may lose everything between now & then and there isn't a damn thing I can do except make my useless $400 a week until then, with an $1800 mortgage due every month (combined with property tax). I was the victim in my car accident, yet I'm treated as a criminal; as a second class citizen. In the meantime, I continue to deal with this roller coaster road to recovery. I too am dealing with some new back issues that's making my life very difficult. No one is giving me the answers I need or want either.....

    Do you see it now? I'll say it again....We're ALL in the same boat on different levels, but we need to deal with it all as it comes. Moment to moment. Tomorrow is too far away. Any one person can take on the BS of just one day. It's when we take the hardships of yesterday and combine them with what tomorrow might bring, that things become unmanageable. Keep the faith and deal with it as it comes.... Things always have a weird way of working themselves out, I promise.

    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • I wanted to say thanks. I truly understand what you are going through as far as leagal BS, I too went through that hell for a little over a year. My injury was work related and should have been an easy open and shut WC case, but where I was living at the time is a high drug abuse county and because I have two chronic conditions that often require ER visits and hospitalizations and they both flared up about 6months before my injury so I got screwed.

    I have read the blend and I have tried a lot of what is on there but there is only so much you can do when every movement brings you to tears. If you were to look at me you would never know how much pain I'm in cause I try to keep it in, amd maybe that's the issue. Maybe I should use a cane or show how I'm feeling on the outside, but that has never been me. I try and do what I can often pushing my self to the point of breakdown. Most people I know would never move if they had the pain I have.
    Right now my concern isn't really with my back but my head and neck symptoms which aparently are caused by nothing. I just want to know how nothing can cause you to fear every movement because of the pain that will be caused. How can mothing make your hands and arms go numb or you to hecome so dizzy just from sitting or standing up that you feel like you are going to black out. If this is nothing I hate to see something of concern.

    I just left my neurologist and he wants me add Lyrica to my long long list of meds, one of which is the max dose of gabapentin. And to see another neurologist because he is running out of ideas. He doesn't think I could have a ceberallar tonsil herniation, because it would be noticable and have to be greater than 7mm to cause my symptoms. I want to believe him, amd it does give me comfort but I have almost every one of the symptoms for that. So maybe a second opinon is good.

    I just want answers, I'm tired of being told it "nothing" when something clearly isn't right.
  • I didn't mean to sound as though I was bashing my neuro, I'm NOT.ihave the greatest respect for him. And he is truly upset and frustrated that he doesn't know all the answers. So he is sending me to someone else not to pass me along (like I first felt) butto get me the answers I need. My fear is if a headache specialist can't figure out what's wrong how will anyone else. I am lookingb to get in with another headache specialist if possible but a lot of the speciality clinics don't accept my insurance.

    Just felt I should clarify, I just reread my last post and it seemed as though I was bashing my neuro.

    Also, I am concerned about my back issues but the head and neck pain and other symptoms are starting to really worry me.

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