It would be awesome if pharmaceuticals would continue to research drugs to help correct Fibro's abnormal sleep patterns. I feel that this is where research needs to zero in on.
So, I realize the FDA is terrified at the prospect of handing massive amounts of of Fibro-people the drug Xyrem because they fear it would be abused and misused as a date-rape-drug once in the wrong hands (and also because it has some side effects to be cautious with). And for this reason, this drug, which has shown promising to a significant portion of FM patients is illusive and out of reach for most FM patients (?). I want to try it, but from what I've been reading it looks nearly impossible to reach if you have FM and not narcolepsy and cataplexy. (Some people manage to get it but it looks like with rising costs it will be more and more difficult for FM patients to try)
Well, then, I think if this drug cannot be dispensed to (most) FM patients for these reasons, drug creators should look into creating new sleeping pills that might work similarly that could be marketed towards FM patients. Fixing the sleep issues fixes much of the other issues for a portion of patients. I realize its not that simple to just create a drug out of this air to fix whatever ailment, but if Xyrem has shown promising in correcting lack of deep sleep in FM patients, I have a hunch that there could be a potential for more development in this arena with drugs that are not exactly the same but similar. I just believe there has got to be some sort of treatment that can be created related to the mechanism of this drug for the FM patient.
(I've been doing tons of research on Xyrem the last few weeks)
Also, I wish that Xyrem could be prescribed for any able patient that had diagnosed alpha-wave intrusion proven with a sleep study. That might prevent less abuse or misuse and limit how much was dispensed, but still ensuring those that really NEED it can get it. I don't even think it should be approved for FM patients specifically , but rather only patients with Alpha wave intrusion or impaired deep sleep. That just makes sense, even if that issue overlaps with FM its more specific and tailored to the specific role of the drug.
I don't even know if I could tolerate Xyrem, but it bothers me and upsets me that some people with FM have been so helped by it but cannot take it because of the limitations the FDA puts on it.
Am I allowed to post youtube videos here? (If not sorry) This one is about
the study they did on the <promising> effects of Xyrem on FM patients. I'm assuming many have already seen this but in case there are some new comers, maybe it could be informative.
http://www.youtube.com/watch?v=o0g3Mvo7ypc&feature=related
Thanks and sweet dreams..
Post Edited (CharmCityLady) : 12/10/2012 10:01:33 PM (GMT-7)