Tuesday, June 05, 2007

Back to oxycodone

So, Fentanyl patches were expensive, and they didn’t work very well at the dosage I could (barely) afford.  This month the doctor and I decided to simplify, and I’m now on just oxycodone, which I take as needed every four to six hours.  I can take up to 15mg at a time, but so far, I’m trying to stick to 10.  Cost-wise, it’s super—an entire month is just $50, instead of about $250 for patches or oxycontin.  On the other hand, the pain really is a rollercoaster.  If I want to wake up pain-free, I actually need to take pills in the middle of the night (not very practical).  I usually try to take them as soon as I get out of bed, but I feel miserable until they kick in, and it can take up to two hours to feel the full effect.  I think I get about three hours of relief per six hours, which doesn’t make the day particularly comfortable or productive.  I think I’d ideally like to be on 20 mg of oxycontin, every eight to twelve hours, but it’s hard to toss around that kind of money every month.  There’s currently some sort of legal action going on against manufacturers of generic oxycontin, too, and I think that the generic is now going to be made solely by the company which manufactures the brand name (because that makes a lot of sense :p).  I’d imagine that will raise prices even higher, although it should give the medication more consistency.  Both Flippy and I have noticed that some generics are of better quality than others, an observation echoed by many other folks on Internet message boards.

Speaking of Flippy, she’s trying out an even cheaper medication this month, the notorious methadone.  Flippy’s pain is greater than mine because she has both fibromyalgia and back pain, so she needs a high dosage of medication than I do, yet an entire month of methadone cost just $14!  Even better, it’s actually working for her, and although she was given oxycodone for break-through pain, she’s stopped using it.  I think this is the first real pain relief she’s had in quite a few months, so in that sense, methadone has been a real gift.  Unfortunately, she’s having a very difficult time with the side-effects, primarily nausea.  Anecdotal reports say the nausea should subside after two weeks, so she’s trying to hang in there.  It’s frustrating that she can’t take any medications like Ativan (our usual source of nausea-relief), because mixing benzodiazepines with methadone is a no-no.  I need to get her to phone the doctor’s office to find out if there’s some other medication she can take in lieu of Ativan, although I sure hope they don’t recommend something like Zofran, which costs at least $20 per pill.  Methadone is an obvious choice for me to try as well, but the side-effects of nausea and agitation really don’t appeal to me.  At all. 

All honeymoons must end sooner or later, and this last doctor’s appointment was the end of my honeymoon with my pain management doctor.  I mentioned Xyrem to him, which is the medical form of GHB, and which has received rave reviews from fibromyalgia patients.  Xyrem causes deep “stage four” sleep, allowing the body to produce human growth hormone, and many FMS patients have been able to completely eliminate all pain medications from their lives after they start sleeping properly.  The drug has been used “off-label” for FMS since around 1998 (it’s FDA-approved as a drug for narcolepsy), and it’s even prescribed by some general practioners who see FMS patients.  It’s extremely expensive, but the manufacturer offers a special program for people without insurance, and the thought of being “cured” is very appealing!  Sadly, my doctor had never even heard of the drug, and was rather condescending about it.  It really surprised me, because Xyrem is considered safe, and is in the last stages of drug trials before seeking FDA approval to be the very first drug specifically indicated for fibromyalgia.  The fact he’d never heard of it, and was mocking about it, was disturbing to me.  I don’t want to take opiates for the rest of my life—I hate them.  They’re expensive, they give me reflux, they have all sorts of social stigmas attached to them, etc.  I want a doctor who believes I can eventually be cured, and I don’t think my current doctor is that person.  Of course I’ll continue to see him, and I’ll continue to take my narcotics so I can function, but all I really want is a normal life again.  If my current doctor doesn’t have the same goal for me, I’ll definitely start looking for another one.  In the meantime, I’m sending the doctor some printouts about Xyrem from the Journal of Rheumatology.  It will probably annoy him, but I need to do what’s best for me and my health.

Posted by Leigh-Ann on 06/05 at 02:58 AM
FMS medications • (2) Comments • Permalink
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