The FMS Round-Up

This blog has probably looked abandoned for many, many months, but it’s really just the blog of someone with FMS/CFS.  Sometimes we get tired!  I’d might as well start by letting you know what sort of meds I’m on at the moment:  20mg of Methadone every 8 hours, up to 40mg per day of oxycodone for breakthrough pain, 60mg of Cymbalta once a day, Ativan 1mg as needed for sleep, and Halcion .25mg as needed for sleep.  I also have both Provigil and Dexadrine available for brain fog, but rarely use either.  They’re both very expensive, and while Provigil works well, I worry about relying on it too much for work and then not being able to afford more of it.  I really think someone should put it through a clinical trial to see if it could be specifically labeled for FMS—it clears the mind without causing jitters, and I often find that being able to work enjoyably has a positive effect on how the rest of my body feels, too.

To someone not familiar with FMS, my list probably sounds like a lot of drugs.  I rarely use the breakthrough oxycodone, though, and often just don’t get the scripts filled.  And I’ve recently started to taper down my doses of both methadone and Cymbalta in anticipation of entering a clinical trial for a new anti-depressant-type product being specifically marketed for FMS, Reboxetine.  It’s already been approved in Canada, Europe, and Australia, but the FDA wants their own trials, go figure.  The trial starts next Monday and I’m supposed to be off all my meds so the doctor can set a proper baseline for my pain.  The tapering itself has been quite easy, and even though I’ve done it quickly, the only side-effects I’ve noticed have been a few low grade headaches and some mild jitters.  The worst part of tapering hasn’t been a side-effect at all, it’s been reality.  Without my medication I’m definitely in a lot of pain, and it’s not very nice.  If I end up with a placebo in the clinical trial (a 25% chance of that), I’ll be without pain medication or antidepressants for 19 weeks, which is risky.  I’d love to find a way to live my life without opioids, though, so if Reboxitine works as well as some say it does, it will end up making this temporary suffering worthwhile.  The trial also pays about $350 over the course of the study (not much compared to some other studies), but if I like the medication, I’ll get a year’s supply free at the end of the study.  Now that’s a great offer, with my Cymbalta costing about $200 per month.

So how ‘bout you?  Participated in any clinical trials lately, or had good results with any new meds?

 

Posted by .(JavaScript must be enabled to view this email address) on 09/18 at 06:49 AM

<< Back to main