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j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
Hi all. I've been absent from S.H. lately. Although I do check in quite often.
I told my p.m. that my meds just weren't covering the pain. And I didn't like the fact that I was on such a high dose of hydrocdone.He tried me on oxy long acting and I.R. for break through. But I told him It just made me tired all of the time. So he tried me on Exalgo 16 mg. 2 once a day, a very slow release of dilaudid, with hydromorphone 4 mg. i.r. for break through.
That wasn't covering the pain either. So he upped the Exalgo to 3 once a day, with the breakthrough. By the way this is a cocktail with 10 M.G. of Methadone also 4 a day.
Rather than depending on the different user reviews I've read online. I'm hoping to hear from you guys. I have a lot of bad side effects that just aren't going away.
very,very forgetful
more depressed don't want to socialize
can't concentrate
and the list goes on!
Click my name to see my Medical history
You get what you get, not what you deserve......I stole that from Susan (rip)
Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!


  • May I ask what was your dosing of Hydrocodone when you were on it? And have you been on the Methadone all that time as well?

    Obviously I am not a medical professional in any way...just a pain patient like yourself. I have been friends with my PM for many years now in addition to our appts. so I've learned a lot by having detailed conversations over lunch..LOL..

    I would almost think you are being way overmedicated....It is highly unusual for a Dr. to prescribe two long acting medications at the same time...

    And being on 40mg of Methadone a day which is already a hefty dose...but then to go to double the largest amount of Exalgo that people go on is pretty scary.

    The Exalgo goes from 8mg....to 12....to 16mg once a day...That usually takes someone months and months to move up to ONE 16mg and many don't ever go there...

    But you are on 32mg of this a day....PLUS more dialudid for breakthrough...(how many do you end up taking a day?) and then the 40mg Methadone....

    That is an extraordinary amount of meds that can have all the side effects you are mentioning...the depression...the lethargy...the forgetfulness....etc...

    May I ask what else you do daily/weekly/monthly to help manage your pain? I apologize for not knowing every detail of your history even though I've read a lot of posts....

    Are you on any type of nerve pain medication to help? How about a muscle relaxer to take as needed?

    Those are two types of pain that opiates do not touch....And most of us are on a combination of meds to where each thing helps take the pain down a tiny notch. This is important as to not just keep upping and upping the opiates to such high amounts...

    I have been on the same dosage for 3 years now and only go up by 5% or so every few years...this is because my chronic pain is going to be here forever most likely and both my Dr. and myself do not want to only rely on opiates for my pain levels..

    I live with a 5-7 each day...and this includes

    daily exercise
    aqua therapy
    steroids when needed
    TENS unit
    not smoking
    eating healthy

    Just to name some things....the key is not trying those once or twice...but having everything together as pieces of a puzzle to all add up including the medication to get me to the 5-7.

    It could also be that you have developed depression which is very common for those in chronic pain. And going to counseling would be beneficial as well as possibly going on an antidpressant. These help with pain as well as the depression...It's not something to be ashamed of as we all know what it's like to live in pain. It's very difficult emotinally.

    So...I would certainly hope that you have shared these feelings/side effects with your PM Dr. and that they are working to find the best comprehensive pain program for you and not just throwing opiates at you in higher and higher doses or else I would be finding another Dr...

    As I said...I'm certainly not a medical person...I am just reacting to the amount of medications you are on and being on the two long acting meds....

    I can't remember if you have talked with your Dr. about the pain pump? This could be the next step that may work for you when such high amounts of oral pills are not working...

    Just thinking out loud here and trying to offer up some thoughts/suggestions.....

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I was on a hydro compound 30-30, I cant tolerate acetaminophen. And at that time 60 mg. of methadone & 5 mg. diazepam x 3 for muscle relaxer.I take 450 mg. of wellbutrin XL. and 20 mg. of Prozac. I've tried every nerve pill made. And can't tolerate any of them. Doc. says I've got a very sensitive system. I say I'm a backwards med. guy. And found that out with over the counter drugs. Years ago when I was young.
    Ive had 8 surgeries over the last 10 years.
    what am I able to do over the week is aqua therapy. And that's it. I can't walk more than 15 min. and stand over 15 too. And that's on a good day!
    I apologise if this sounds offencive, but until you've walked in those shoes, don't criticise or recommend any pain regiment that works for you! And by the way 64 mg. is the max. prescribed for unusual patients. or highly tolerant patients.
    But thanks for taking the time to respond. The pain pump is my next stop, I believe. And I did ask for a reduction of the Methadone. To 3 mg. per day.
    I do definitely think you responded with the best intentions in your Heart!
    Thanks, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Thanks for sharing more...I certainly wasn't trying to criticize your regimine by any means...You posted asking questions about your symptoms and I just shared some thoughts on what it could be as well as suggest other things that maybe you hadn't tried before..So I just try to share what a general pain management program includes....medicinal and non medicinal..

    And when I meant the "max" on the Exalgo...I mean for someone starting the medication...

    But obvously this is what you and your Dr. are comfortable with and the combination of all these meds..I would never think to recommend someone take what I am taking as we are all too different.

    So...hopefully you will talk with your Dr. and figure out what is going on with all the side effects and be able to fix them...

    Keep us posted...
  • Cath111CCath111 Posts: 3,702
    edited 09/04/2012 - 3:44 AM
    I'm also on hydro, 10 mg up to 6 a day and 5 mg diazepam as needed, usually 3 a day because it also helps my anxiety. Because my pain isn't being helped a lot (but it's kind of manageable) my surgeon wanted to put me on OxyContin with hydro for breakthrough. I resisted, but finally told him I'd try it. By the third day I was suicidal and my hubby flushed them all down the toilet. So I went back to the hydro regimen, hoping that eventually I can cut down after surgery in December.

    I do have 5 mg percs for those really bad times, but manage with meds, rest and wearing my soft brace a lot. I also use lidoderm patches that help somewhat.

    So I guess I can't help as I'm in your boat. Dilauded does nothing for me, I told you about the oxys, so I'm just sticking with what works best, albeit not fantastic.

    Good luck and I hope you find something that gets you back in those red ruby shoes.
  • So sorry to read about your latest problems. I know how you have suffered over the years. I am sorry i can't give you any information about your latest meds. Just wanted to say that I do hope you find something soon to help with the brutal pain you are suffering with.
    Best to you my friend
    Patsy W
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    thanks girls. This stuff just makes me tired and stupid. I can't concentrate either. I guess that's why they call it dope uh!
    Cathie, I think your right. I need those ruby reds'!
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
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