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HIV, HCV, hemophilia + pain, med suggestions?

Discussion in 'HEP C HIV' started by akcol, Jun 6, 2009.

  1. akcol

    akcol New Member

    Hi All,
    thank you for your wisdom and contributions to a REALLY important resource for us all.

    i'd really like some advice as to what combinations of pain medications have worked for you to allow a good amount of relief from your pain, but when used in low varying doses, and switched with one or two other pain meds that use slightly different receptor pathways, have allowed you to stay at low effective doses of pain medications to treat chronic, ongoing pain.

    also, in your experience, are all time released medications as quick and wholly invasive and difficult to withdraw from?
    for instance, a 12.5 mcg patch of Fentanyl, which is a morphine based med, used for two day (it's effective time) then switched to Oxycodone (opiate based medication) 5mg sized capsules, used with varying similar doses - effective and aggressivley different enough to keep my husband's body guessing, able to not develop physical dependency?

    so - success stories/suggestions with alternating low dose pain meds please.

    some particulars, perhaps you have this set of circumstances and can speak to them directly:
    my husband, with a genetic bleeding disorder that destroys joints and muscles and causes spontaneous internal bleeding, took varying doses of Oxycondone (5mg size: 4-20 according to the bleed size) for many years, effectively, no issues other than insisting on capsule versus pill form to avoid as many binders in his multi pill daily regime.

    during the recent six years, he's had both ankles transplanted (yup, first man with hemophilia to have cadaver ankles, they work beautifully after a four year recovery) and recently, had his elbow joint removed, to relieve some crippling pain there.

    he does have ongoing chronic pain, his body will continue to be destroyed via hemophilic joint and muscle bleeding. additionally, from the products used to treat hemophilia when he was younger, he acquired HIV and Hep-C.

    physical dependency was created when a well meaning doctor (hematologist) suggested time released pain meds: Oxycontin. since the half life of these meds is up to 72 hours, adding a dose every 8 hours layered the medication in his opiate/pain receptors to increase his dose need from 40mg to an eventual 280mg (surgery) every 8 hours.

    for the past five weeks, we've (we're a team) withdrawn him from Oxycontin completely, by adding Dilaudid to the mix, and completely pulling out the Oxycontins a few days after. we relied on the Diluadid, then tapered it down for the hell ride withdrawal of five days.

    as his new pain management doc struggles to understand the nature of hemophilia, he has created a third withdrawal event as my husband ran out of a conservative script for Oxycodone.

    my husband is very motivated and able to pull himself from medication, as well as endure jaw dropping pain events, but the third withdrawal session about did us in. it's obviously not good for his immune system, nor our physical and mental health.

    we're aware my husband's need for pain medication will be ongoing. this was a hard realization - but hey, life is worth living, and living to the best of his ability and mine.

    so - success stories with alternating low dose pain meds please.
    thanks so much,


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