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Thread: I am terrified and need answers

  1. #1

    I am terrified and need answers

    Hi, I am in need of answers. My husband has had the Morphine Pump for about 7 years. It allowed him to go back to work, which was a miracle, but he started having really weird sleep habits. He never slept for more than an hr at a time, did this weird sleep walking, fell asleep standing up...horrible falls in the middle of the night...you get the picture. So, the Dr. told us about Prialt, and 2 yrs ago we started getting the Morphine out and the Prialt in....I'm not sure what dose he is at, but it doesn't control breakthrough pain, so he is still taking oral Dilaudid at night. So...he is sleeping about 3 hrs at a time, which is better, but never in bed, and rarely on the couch. He falls asleep on the kitchen floor, the patio while smoking, going to the bathroom and he still has some nasty falls. He most recently fell and broke his nose in the middle of the night. Okay, so the sleep is better than it was, but he is always exhausted. And now we have new mysterious side effects that don't exactly coincide with those listed on the Prialt website, and the Dr. is stumped too, which really makes me nervous. About a year ago he got this horrible sore on his big toe, that still has not healed, and he has been to wound care and everything, carefully wrapping it every day before work. A couple months ago, the same type of sores began on both of his legs. They start out looking like a chichen pock or something and then errupt in a deep, puffy sore. A couple days ago, one showed up on his arm. Most recently, he has a weird large red patch on his forehead! What is going on? He also gets yeast infections in his mouth a lot. Chronic pain is bad enough, but all the weird side effects from the meds is just overwhelming! I feel like we are alone on an island with no help of rescue. Please, if you have any ideas, I would love to hear them. I am terrified of what these drugs are doing to the man I love.

  2. #2
    Hi Rosie,

    Quote Originally Posted by Rosie
    Please, if you have any ideas, I would love to hear them.
    This may sound off-the-wall but is there any possibility that he had HIV/AIDS?

    The yeast infections in his mouth and the sores you describe are not dissimilar to what a person with HIV/AIDS or a compromised immune system gets.

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  3. #3
    Senior Member lynnifer's Avatar
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    Exclamation

    I would be afraid of a developed allergy ... hopefully the nurse or doc catch this thread!
    Last edited by lynnifer; 07-25-2007 at 09:28 AM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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  4. #4
    Rosie,

    What you describe is unusual. Generally, both morphine and ziconitide (Prialt) make people sleep more. I am wondering if your husband has a sleep disorder resulting form some other cause. If he has not seen a sleep specialist, I think that he should. In one of your statements, you say that he fell asleep while smoking. In discussions on this site, many of our members have found that smoking dramatically increases their neuropathic pain. As a former smoker myself, I know that I slept only 3 hours a day when I smoked, that when I stopped, I slept longer and better.

    Regarding the sores and the yeast infections, it seems to suggest that your husband is having some kind of immune suppression. I did a literature search but was not able to find any data suggesting that ziconitide suppresses the immune system. According to the Mayo Clinic site, the following are some potential side-effects of ziconotide:
    http://www.mayoclinic.com/health/dru...ation/DR500617
    More common

    Seeing, hearing, or feeling things that are not there; thoughts of killing oneself.

    Less common

    Chest pain; chills; confusion; convulsions; cough; dark-colored urine; dizziness; drowsiness; fainting; fast heartbeat; fever; general feeling of illness; lightheadedness; muscle spasm or jerking of all extremities; muscle stiffness; rapid, shallow breathing; shortness of breath; ; sneezing; sore throat; stiff neck or back; tightness in chest; troubled breathing; trouble concentration; trouble sleeping; unusual tiredness or weakness; wheezing.
    I suspect that it is not due to the ziconitide. On the other hand, high dose opioid use is associated with immune suppresion (Source). There is also evidence that heavy drinking (alcohol) along with dilaudid use will suppress the immune system. Many opioids suppress the immune system, some more than others. One approach may be to choose another drug for the breakthrough pain.
    http://www.ncbi.nlm.nih.gov/sites/en...&dopt=Abstract
    1: Br J Pharmacol. 1997 Jun;121(4):834-40. Related Articles, Links

    Antinociceptive and immunosuppressive effects of opiate drugs: a structure-related activity study.

    Sacerdote P, Manfredi B, Mantegazza P, Panerai AE.

    Department of Pharmacology, University of Milano, Italy.

    1. Although it is well known that morphine induces significant immunosuppression, the potential immunosuppressive activity of morphine derived drugs commonly used in the treatment of pain (codeine, hydromorphone, oxycodone) has never been evaluated. 2. We evaluated in the mouse the effect of the natural opiates (morphine and codeine) and synthetic derivatives (hydromorphone, oxycodone, nalorphine, naloxone and naltrexone) on antinociceptive thresholds and immune parameters (splenocyte proliferation, Natural Killer (NK) cell activity and interleukin-2 (IL-2) production). 3. Morphine displayed a potent immunosuppressive effect that was not dose-related to the antinociceptive effect, codeine possessed a weak antinociceptive effect and limited immunosuppressive activity; nalorphine, a mu-antagonist and kappa-agonist, exerted a potent immunosuppressive effect, but had very weak antinociceptive activity. The pure kappa-antagonist nor-BNI antagonized the antinociceptive, but not the immunosuppressive effect of nalorphine. 4. Hydromorphone and oxycodone, potent antinociceptive drugs, were devoid of immunosuppressive effects. 5. The pure antagonists naloxone and naltrexone potentiated immune responses. 6. Our data indicate that the C6 carbonyl substitution, together with the presence of a C7-8 single bond potentiates the antinociceptive effect, but abolishes immunosuppression (hydromorphone and oxycodone). 7. The single substitution of an allyl on the piperidinic ring resulted in a molecule that antagonized the antinociceptive effect but maintained the immunosuppressive effect. 8. Molecules that carry modifications of C6, the C7-8 bond and C14, together with an allyl or caboxymethyl group on the piperidinic ring antagonized both the antinociceptive and the immunosuppressive effect of opiates and were themselves immunostimulants.


    Quote Originally Posted by Rosie
    Hi, I am in need of answers. My husband has had the Morphine Pump for about 7 years. It allowed him to go back to work, which was a miracle, but he started having really weird sleep habits. He never slept for more than an hr at a time, did this weird sleep walking, fell asleep standing up...horrible falls in the middle of the night...you get the picture. So, the Dr. told us about Prialt, and 2 yrs ago we started getting the Morphine out and the Prialt in....I'm not sure what dose he is at, but it doesn't control breakthrough pain, so he is still taking oral Dilaudid at night. So...he is sleeping about 3 hrs at a time, which is better, but never in bed, and rarely on the couch. He falls asleep on the kitchen floor, the patio while smoking, going to the bathroom and he still has some nasty falls. He most recently fell and broke his nose in the middle of the night. Okay, so the sleep is better than it was, but he is always exhausted. And now we have new mysterious side effects that don't exactly coincide with those listed on the Prialt website, and the Dr. is stumped too, which really makes me nervous. About a year ago he got this horrible sore on his big toe, that still has not healed, and he has been to wound care and everything, carefully wrapping it every day before work. A couple months ago, the same type of sores began on both of his legs. They start out looking like a chichen pock or something and then errupt in a deep, puffy sore. A couple days ago, one showed up on his arm. Most recently, he has a weird large red patch on his forehead! What is going on? He also gets yeast infections in his mouth a lot. Chronic pain is bad enough, but all the weird side effects from the meds is just overwhelming! I feel like we are alone on an island with no help of rescue. Please, if you have any ideas, I would love to hear them. I am terrified of what these drugs are doing to the man I love.

  5. #5
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    Dear Rosie, I had the same problem directly after my accident with thrush - this is the yeast infection in the mouth. I do not have AIDS or HIV. At the time of my crash, I had mono as I later discovered. There is a mouthrinse that treats thrush and I've never had it again. M.

  6. #6
    Banned adi chicago's Avatar
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    antibiotics could cause an yeast infection like candida,or could be stomatitis.
    i had it and they gave me a syrup [nistatin ]i washed my mouth and after a week i was ok.
    ps.also make sure is not the steven johnson syndrome.
    http://en.wikipedia.org/wiki/Stevens-Johnson_syndrome
    Last edited by adi chicago; 07-25-2007 at 10:10 AM.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  7. #7
    Rosie,
    Is your husband diabetic?

    Seven years on morphine...damn.
    Is it even controlling the chronic pain?

    Him not sleeping is a part of chronic pain.
    And he may find comfort in the most insane positions. Those only provide comfort for awhile though.
    Then your up and at it again. Searching for another comfort zone.or saying screw it and you just find as much as possible to do to fool the mind.

    Maybe consult with another doc?
    Life isn't about getting thru the storm but learning to dance in the rain.

  8. #8
    Thank you to everyone who replied to my e-mail. I really appreciate it! I think Wise Young may be onto something with the morphine. Here is my question....He spent years on high doses of oral morphine, and had enough morphine to kill a horse in his pump(can you believe his dr told us that?) now he only takes 2 pills at night and has Prialt in his pump....Okay see where I'm going here? Is it from long term use of built up morphine in his system that is causing him to have the immunity issues? Any thoughts? It's not AIDS, thank God. I called the Prialt company today too, and they have no data indicating that the sores are related to their product.

  9. #9
    Senior Member Broknwing's Avatar
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    Rosie-
    you said he takes Dilauded during the day....This is a VERY strong opiod pain killer...I believe this is the medication Dr Young was referring to regarding immuno suppression....He may need to go off of the Dilauded...Does he have a pain management specialist who is treating him/his pain issues?
    'Chelle
    L-1 inc 11/24/03

    "My Give-a-Damn's Busted"......

  10. #10
    Hi Broknwing-
    He mostly takes the Dilauded at night. I'm not very impressed with his pain doctor, but we haven't found anyone better. It feels like I'm talking to a brick wall when I ask her questions. I feel so alone right now.
    Rosie

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