Sunday, August 05, 2007

Yeah, I’ve still got FMS, too

I’ve still got FMS, and it’s either getting worse, or I’ve developed some sort of super-tolerance to pain medications.  Last fall I was excited because I was prescribed 10mg of oxycontin, and I’d hoped it would help get my sleep back on track, and help me wake up pain free.  Yes, I was just taking one 10mg oxycontin per day.  Jump ahead eight or nine months to the present, and I’m on oxycodone because it’s less expensive, and I take 15mg every four hours.  I’ve gone from 10mg per day to 90mg, and while I have some pain-free moments, I’m pretty content if I can get my pain down to a steady three or four on the pain scale.  Getting it down to a two is like a miracle and it makes me want to dance a jig.  I’ve never been one to develop a tolerance for medications, (for example, I’ve been on the same dose of Ativan since 1999 (and it still works for me)).  That’s why I’m confused about the way my pain seems impossible to control—is it getting worse, or are the meds just not working the way they should?

I would prefer to be on oxycontin because it lasts much longer than oxycodone, but the cost is about triple (and unaffordable without health insurance).  I tried inexpensive MS-Contin, and even at a fairly big dose I didn’t feel anything.  The one inexpensive med I haven’t tried is methadone, a drug which costs about $13 per month and which worked miracles on Flippy until it interfered with her more-important bladder medication.  The reason I’ve avoided it is because it seems to bind with every pain receptor available, rendering meds for break-through pain ineffective.  That’s sort of scary, because if I had an accident and broke a bone, or needed some sort of surgery, it would make it very difficult for me to be treated for pain.  I’m not at the point where methadone is my only option, but I’m starting to think about it more.  I hate going to my pain specialist every month and asking for higher and higher doses of medication, because I know it doesn’t look good in my file, even if I truthfully need it.

The one bright light in the distance is Xyrem.  Xyrem restores normal sleep patterns in patients with fibromyalgia, and given my recent problems with excessive sleepiness, I think my sleep patterns need a complete overhaul.  The drug is in Stage III clinical trials right now (unfortunately, the trials aren’t in Nevada), but the pharmaceutical company really thinks they’ve got a shot at FDA approval for the treatment of FMS by next year.  I asked my pain managment doctor about it and first he’d never heard of Xyrem, and then he had an apoplectic fit over it being a “date rape drug”.  He calmed down slightly when I pointed out that any medication, like Ativan or Xanax, could be used as a date rape drug—Xyrem, aka “GHB”, was misused in the past because it was a legal, otc health supplement, and easy for people to get.  My doctor still refused to prescribe it, despite all the positive literature about it, but offered to refer me to one of his more adventurous colleagues if I wanted a prescription.  I really do want to try it, but it’s fairly pricey, so it’s going to have to wait.  That’s why I’d love to get into a clinical trial: free medication.  Xyrem either works for people or it doesn’t, but the people it’s helped have been practically “cured” of their FMS, so I think it has a lot of potential, and it’s something to dream about on a bad day.  If you want to know more about the Xyrem clinical trials (maybe there’s one near you), here’s a list:  Xyrem Phase III Trials

Lest you think I’m all about pharmaceuticals, I tried something a bit experimental: “Bio-Cranial”.  I’ll write an entry about my experience later today.

Posted by Leigh-Ann on 08/05 at 05:34 AM
FMS medications • (2) Comments • Permalink
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