Sorry everyone, I know FM/CFS Awareness Day is technically over...
But thought I'd post anyhow.
I did a lot of FM/CFS-related posts on my personal Facebook page, but wore myself out before I could make it here. Today I got an e-mail on FM news stories that mentioned two drugs; one I'd heard little about, and another I'd never even heard of, Sodium Oxybate (aka Xyrem aka GHB) and Flupirtine.
I found this article on Flupirtine, and was astonished to read how GREAT it sounded as a treatment for FM. A non-narcotic, non-NSAID analgesic that also helped with energy! I got really excited. Then I looked at the date on the article. and saw it was dated in the year 2000, much to my disappointment. Apparently this drug has been available for a couple of decades in Europe. So what I want to know now, is why is this the first I'm hearing of it? I still have to do some follow-up research to see if I can find the answer, but I'm guessing it will be FDA/Big Pharma red tape -related.
The second drug, which vaguely rang a bell, after a quick Google search to refresh my memory, is being prepared for marketing under the brand name Xyrem. I also found out that it is basically GHB...Better known as "The Date Rape Drug".
I thought, WOW. Are they serious with this? Do they know about Fibro fog? It just seemed like a bad move, a VERY bad move, to prescribe a drug that makes date rape victims forget what happened, as well as being effective in making making people forget traumatic experiences. My first thought was, not a chance I'd try that! I then did a search on memory and GHB, and found this article, which explained the effects of it on people with FM/CFS.
Sounds AMAZING. The main mechanism by which it works seems to be by quieting the overactive nervous system of people w/FM/CFS. It also seems to help with anxiety, as the article mentions. (I'm a total anxiety ball, and I've often wondered if day after day and year after year of pushing past all that anxiety (I rarely let it stop me) had something to do with my body beginning to betray me, that the stress helped run me down and make/keep me sick.
Here's a link about Xyrem & FM; note the main point:
"Some people already take Xyrem, off label, for fibromyalgia and anecdotal evidence supports its use. Clinical trials have shown that the drug can significantly improve sleep quality and reduce pain in people with this condition. The first 2 Phase III trials have been wrapped up but the findings are not yet released. Jazz Pharmaceuticals submitted a New Drug Application to the FDA in late 2009."
Hence, probably not the right drug for me, I already sleep decently (aside from staying too late.) And my pain is currently manageable. To learn more about Xyrem, check otu this article: http://chronicfatigue.about.com/od/treatingfmscfs/p/sodiumoxybate.htm
That's all folks...falling asleep here,now, yay!!!!!!
Oh, did wanna mention that I made it to the gym today! So it's ON! Well...guess I should wait & see how tomorrow feels....but I'm optimistic and can't wait to work of some more of the pounds I've accumulated!
Hope you all had a great Awareness Day & did your part! And if you live in Southern California, try & make it to the NFA's even on Saturday!
Hi,
ReplyDeleteI haven't heard about the first drug either but I have heard a lot about Xyrem. I listened to a lectute at the National Fibromyalgia Convention (I think 1995? and he talked about all the new drugs at the time. Xyrem is very dangerous. It can even kill you. He said that you have to take it in bed and have someone with you because it knocks you out, then it wears off and you have to have it again. But as soon as I heard that it was dangersous, I crossed it off my list.
I joined a Fibro Group in another state when I was living there. I never had time to go to the meetings but received the e-mails. It seemed like the group leader was trying to sell people on being part of the study on the drug. I wrote her about what I had heard and she just tossed it aside. Before joining any medical trials I think it is important to know how dangerous the drug is. Yes it is the date rape drug, crazy, isn't it?
Carol Wong