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    Old 09-15-2008, 07:33 AM   #1
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    I have a question - very confused...

    Hello everyone! I miss talking to all of you, but I do read most of the posts and my heart goes out to each of you. I just at the stage when my hands and arms have a lots of pain and problems that simple typing can increase my pain to the levels I can't handle.
    Not a fun time I am having now so I really don't want to upset anybody here.

    I have an app today with my PM DR. He may adjust my meds again due to my pain levels. I am thinking about LA part.
    Right now I am on 20 mg every 6 hours of Oxy as LA and 6 10/325 each of Percocet as BT. Keppra for Nerve pain and some other meds for other conditions. All together 35 pills right now and dose is growing every week due to my chemo therapy treatments for RA and MS.

    I read a lots of literature written by a competent DR's in the field of CP and written by sportsmen who went through tough times after their injures and ortho surgeries. The interesting thing is: a lot of them share their thoughts and their DR's thoughts about LA and BT meds.
    Some people feel about it same as I do and that is why it drives me nuts. I feel that If i have a "good day" and I don't have to take that extra BT I am allowed - I will not take it. But when it comes to LA - you must take whatever Rx to you. I just concern because I see how my doses go up and up and body adjusts pretty fast to it anyway and than I am at square one with levels of pain.
    So I am thinking that going up and up on LA meds may provoke my body to adjust to meds faster than if I would be on low dose of LA and than just BT as needed.
    I read that some DRs afraid to prescribe BT to people because they afraid people will obuse the Rx doses. So it's easier to control uncreasing LA meds for CP than BT.
    I also read that too many DRs don't make a big deal about BPL, they don't believe much in it. They say that some research show that it really doesn't have any affect on everyone's treatment. In fact I asked my PM DR about it, he said that a lot of literature suggest that BPL has something to do with it, but on practice not always the case and that is why they take every case very individually and approach to it very individualy. He also said that now they have a better indicators than BPL when they talk about PM and treatments.

    I don't know, guys, what to think. As you can read, my post sounds very confused: I go through this each time I know it's time to do something about my meds. And since my Dr always includs my opinion in making decisions about my meds - I feel I have to be prepared as I always do, but at this point I don't know what can I say anymore???
    Simple as this: I am afraid to go on higher doses of LA meds. I am a very strong individual and I am very serious about this type medication. My PM knows this and trusts me. He understands where I am coming from regarding meds, but he is also a DR and his job to help me. That is what he does very well.
    What is your thoughts about LA and BT meds? IS anybody here understands where I am coming from?

    Thank you in advance and all the best to all of you!

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    Old 09-15-2008, 07:56 AM   #2
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    Re: I have a question - very confused...

    My doctor will not give me any bt meds apart from a low dosage of Valium and what I can use from the pharmacist. Usually only Paracetamol. A lot of time I feel that I could use something stronger but some doctors are very wary here, mine any rate. I don't really want to go any higher than I am on the patch I wear 100 micro/hour every 3 days. I hope your doctor is more willing to help than mine.
    25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

    Old 09-15-2008, 11:39 AM   #3
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    Re: I have a question - very confused...


    This is not an easy question to answer.

    There's a text book answer, then a real-life answer, and they conflict.

    The textbook answer is that the focus should not be on the dose of medication, but on the pain and the relief. These medications have no ceiling, no dose that is too high, so long as side effects are tolerable. This is totally true. So, in theory, one can take as much medicine as it takes to relieve pain. When is comes to those who are dying of cancer or some other disease, this is nearly always followed. Some people are on 1,000mg of morphine 3 times per day and that makes them comfortable. If they need more, and the side effects aren't too bad, they get more. Those docs who are on the leading edge of PM feel the same way about non-malignant chronic pain. That the patient and the doc should not be focusing on the dose but on what it takes for relief. I agree with this to a point.

    The "real-world" answer is different. Like you, I get concerned about dose. In fact, I have told my doc that I will go no higher on my MS Contin dose regardless of how much pain I'm in (unless for surgery or something emergent). But for LA PM meds, I will go no higher. And this contradicts the textbook answer totally. Why do I feel this way? Because tolerance scares me to death. I have already detoxed off of an ultra-high dose of fentanyl and I'll never suffer through something like that again. I promised myself that. I have decided that if I cannot bring my pain down by other means, then I need to learn to live with this pain as it is. I don't see this as heroic or that it makes me super-pain stud, just practical.

    However, there are other ways for meds to be the answer. Opioid rotation is one of the most useful therapies for handling tolerance. Just because we may reach a limit on one opioid does not mean we are at the limit on all of them. Just because I'm so tolerant of morphine doesn't mean I'm equally tolerant to oxycodone, or oxymorphone, or some other opioid. Rotating me to another opioid and starting somewhat low, but not so low as to cause WDs, is the way to go. And this can be done over and over again. At some point, I can return to morphine from another opioid and start the cycle all over again. Maybe even return to methadone, where my dose would probably be around 80mg per day, like it was before I went on MS Contin.

    Some docs like to practice drug holidays - but I am vehemently opposed to this. I don't see any reason to put a patient through such pain just to lower tolerance. Not when opioid rotation is available.

    I totally understand your confusion and fear. I feel the same way. Have you discussed opioid rotation with your doc? I realize you suffer from many bad interactions between drugs and with other opioids, so this becomes even harder for you, but there has to be a way.


    Old 09-15-2008, 02:30 PM   #4
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    Re: I have a question - very confused...

    thank you so much! I agree with you on every word you said, I feel the same way - absolutely! And Yes, my PM believes in rotation and that is what we done during this 3 years many-many times. The only problem with me I do have bad reactions to many of meds, but I love him because he never gives up. For example when I had bad reaction to Fentanyl patch he told me not to worry, the answer is always there and I will not be left with no hope. So he does it for me, even though he told me I am a patient with "a lots of surprises".

    I just came back from seeing him today. He is very upset about me being Dx with RA since it means my immune system is very compromised. He told me that he could increase the dose of my LA to help with my pain, but doesn't suggest to do so. My HR at his office today was 49 and even though I get even lower sometimes, this is not a good sign since narco meds can bring your HR dangerously low. He asked if I am able to hang on with levels of pain I am experiencing right now until RA meds start working which can take 2-3 month.

    I am on chemo therapy medication for RA at the moment and some others too. The reason for him doing this to see how much pain will go away after RA meds start working. He said that when people have another health issue in a body which causing severe pain like RA it adds more suffering with Neurological pain I have due to my spinal issues and damaged nerve after spinal fusions.

    I am so proud to have him, such knowlegable and carrying DR as my PM Doctor. It could be so much easier for him to just increase my LA for me, go home and feel better. But instead, he worries saying that due my heavy medications I am on for different issues it can be very dangerous for me to increase Oxy. He suggested to go high on Keppra (for the nerve pain) since it's not a nacro meds and doesn't have same effect on a body and see if this helps pain.
    He doesn't know how often I get low HR, but seeing it today, he got worry that this can be dangerous for me going on even higher doses of Oxy. He asked me 3 times if I sure can leave with level of pain as I am now for another 2-3 month until my RA meds kicks in. If I would say NO, he said that than he would contact my Cardiologist to put me on 24 hr. hulter to monitor HR.
    This is what I call a DOCTOR.

    Personally I don't believe that doses don't matter; of course they do. I do want a better life quality, but I want to be smart about it though. I did learn how to leave with high degree of pain and can tolerate more than others ; I guess when you grow strong, make yourself strong (your mind and body) it helps to handle pain at high levels. Not easy, but I try and often can.

    That is why I am so satisfied that he did not go an easy way, that he cares and thinks what is the best way to protect me as a whole, not just his "part of the body". like some of them do. If every DR would be this way, I wouldn't suffer so many years with RA and nobody wanted to see further than their noses, you know?

    I wish everyone a better day tomorrow!
    With love, Moldova.

    Old 09-16-2008, 07:16 AM   #5
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    Re: I have a question - very confused...

    I am not sure how to answer the questions that you posted, but i wanted to let you know that I am thinking of you now as you embark on this part of your journey with the Chemo etc.

    For sure this is not an easy road for anyone. I actually have a dear friend who is going thro Chemo right now for a disease call Necrotizing Vasculitis. it is a very horrible and dabilitating illness. She also has problems with her heart valves that stem from a chilhood illnes. Fro her experience I can only imagine what you might be experiencing with the chemo!

    I just wanted you to know that I am here for you and keeing you close in my heart.

    Old 09-16-2008, 09:19 AM   #6
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    Re: I have a question - very confused...

    Thank you Chrissy so much and best wishes on your recovery!
    Hugs and blessings to you, sweet heart!

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