The Blog Pound

Wednesday, September 24, 2008 , late evening

Down for the count

I can probably safely write this post on Flippy’s behalf, too… we’re both down for the count after two intense weeks of conventions, conferences, medical appointments, financial stress, and cat death. With both of us suffering from CFIDS, it’s not unusual for both of us to crash after periods of intense activity or extreme emotional stress, which can certainly describe the last 14+ days. The last straw was a very long medical appointment for each of us on Monday, where we endured a battery of tests in hopes of qualifying for a new study about fibromyalgia. I’ve been in non-stop clinical trials since March or so, and the grind of weekly appointments, weekly blood draws, daily dairies to be kept, etc., is starting to catch up to me. Today the trial coordinator called and said that they didn’t draw quite enough blood from me at the appointment, so could I please go back in and have the labs redone? I wasn’t happy (and have refused to go until next week). I’ve had blood drawn at least 17 times since March (by my calculations), and my formerly good veins are now sore, cranky, and collapsing. The thought that I now need to have extra bloodwork because of incompetence is annoying.

The only reason Flippy and I are involved in this trial is because it’s for a new FMS drug called Reboxitine, and the trial doctor has had such good response that she really wants to see us in the trial and feeling better. I honestly feel her motivation is sincere—- she doesn’t want bodies for her trial, she wants happy, healthy success stories. With just a 1 in 4 chance of getting a placebo, there’s a good chance I’ll get to try Reboxitine starting next week, and I hope it’s as wonderful as the doctor claims. At this point in my life I’ll take anything which makes me feel slightly normal… I don’t need perfection. If the drug doesn’t work at all, there’s no way I’ll last the entire 23 week trial because I’m required to be off all my other “heavy” meds to participate, and I’m not too happy about that. It’s bad enough to have to wean off Cymbalta, an antidepressant which has kept me very stable and worked well on my FMS pain for the past six months. The worst part is that I’ve had to wean off all opioids, and after two solids years on them, I feel their loss. Long story short, without my pain medication I’m in a lot of pain. When I’m in pain I can’t sleep, when I can’t sleep the pain is worth, yada, yada. I’ve even had a tiny bit of trouble weaning off methadone, which is an effective and inexpensive pain medication, but whose long half-life wreaks havoc when you try to stop taking it. I got myself down to two small doses per day (5mg each), and then tried to just do a “cold swap” from methadone over to oxycodone (which is easy to taper from), and that just didn’t work. I’ve had all the most exciting withdrawal symptoms… night sweats, temperature sensitivity, weird skin sensations, anxiety, stomach cramps, etc. Today I went back on a lower dose of methadone (2.5mg) and that helped eliminate the withdrawal issues, but it’s obvious that this is a medication I need to taper with respect. If you’ve never been on a drug which can cause physical dependencies, it’s not scary, and it’s not the same as having a psychological addiction. Your body learns to expect the drug, though, so you need to slowly taper down your dose over time if you want to stop taking it, and the “cold turkey” approach is not recommended! I generally taper every really slowly, taking up to three months if necessary, but there was short notice for this trial and I’ve had to take some shortcuts. I really do hope the drug will show results. It’s already approved for use in 51 countries around the world, including all of Europe, the UK, and Canada, but the FDA insisted on independent studies in the US before they’d approve it here. Nothing like ensuring the price of the drug will be unaffordable to people like me once it hits the market! At least many of the companies running the trials will “reward” study participants with free, long-term access to the drug after the trial is over, so in this case, I believe I’ve been told we can have a year of free medication at the conclusion of the study.

This is my third major drug trial this year, and it’s probably a bit much. Too many tests (although I can say that I’ve had so many weird blood tests and urinalysis and even multiple EKGs that I’ve probably got about the best health care in the country right now). The testing center is way on the other side of town, which doesn’t help, and the once a week visits can be draining. Being someone without health insurance, it’s really tough to complain, though. The drugs I’m testing are all in stage 3 trials, meaning that they’re known to be safe, but now the correct dose is being determined—I feel no risk whatsoever, especially with the study doctor available by cell phone 24 hours a day. If not for all this weaning and tapering of my regular medications, I’d be downright cheerful about this trial (once I stopped feeling tired).

Flippy and I have been to SuperZoo and BlogWorld Expo over the past two weeks, so that’s what we’ll eventually write about when we get some energy back. Lots of fun new pet products at SuperZoo, but not a heck of a lot to say about BlogWorld Expo. The latter was too expensive, we weren’t allowed to attend seminars, and the exhibitors were just the same old thing (and there seemed to be fewer of them). It’s nice to get free t-shirts, but it cost us a combined total of $120 to attend, and there’s no way we got much out of it except those freebies. This is probably our last year for that event, but SuperZoo is forever.

Posted by Leigh-Ann on 09/24 at 10:20 PM
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