Posted by SueInCincy on May 26, 2005, at 20:10:34
In reply to Re: Xyrem (educate its use for fibromyalgia) » jerrympls, posted by lunesta on April 6, 2005, at 10:10:15
HI,
I have been taking Xyrem for fibromyalgia for about two months now. I had high hopes for it -- you know, that I could get rid of all the other meds and live a happy normal life. Whatever that is.
I think I am benefitting from it, although it's not exactly a Lazarus-get-up-and-walk thing.
By itself, Xyrem does not put me to sleep. I still have to take a 1 mg valium to actually GET to sleep. I find this puzzling, because the doc stressed how important it was to take the drug IN BED, because it would knock you out before you could even brush your teeth.
I happened to find this board this morning, and I saw that depressives do not respond to Xyrem with drowsiness. I had never heard this, and I wonder what the source of that assertion is/was.
I do think my fibro is better, but it seems I have more arthritis-type pain. I am pushing 50. I wonder if anyone else has noticed this.
Hi from a newbie.
Cheers, Sue
> Yes its higher than oxycontin and morphine in trying to get.
>
> Unfortunately I suffer fibromyalgia which severe pain and sleep dysfunctions exist and I am seeing a world reknowned expert doctor that knows Xyrem's slow wave sleep and growth hormone benefits in fibro.
>
> I am on the list for clinical trials for it for fibro, i talked to Xyrem's director and the results of a new pilot study will be relased summer/fall this year with positive results.
>
> Also it will be approved for FULL narcolepsy symptoms not just cataplexy , which has already been submitted to the FDA for review.
>
> Fibromyalgi may tke till 2008 she said at the most, but will significantly make the price go down as narcolepsy is small population where if Xyrem is approved for fibro I aimgine it will be a huge profit for them and etc etc and more studies with GHB will be done.
>
> Orpahn medical is a cool company because they study things for rare or hard to tret disorders. I highly respect them and NORD Foundation, because they provide Xyrem and other meds for free for rare diseases with minimal treatments depending on your income or insurance.
>
> Right now, 1 Xyrem bottle is 250 dollars and at its stanadard dosage, I need one every 11 days.
>
> I am applying for disablity also. I really need it. Im only 22 and my life is ruined.
>
> I need pain control at the moment, But the doctor I am seeing is in NYC and far to get to. I need major pain help - I mean, I would want to die if I cannot get rid of this pain. I am on Tyleon #4, Neurontin high dose, NSAIDS and Xyrem + special IM injections currently but the pain is not being managed.
>
> Someone, dr bob, please help me. All doctors are opiod-phobic, but i have medical documentation of my problems. I just dont want to wait weeks for these appts as Im feeling very bad.
>
> lunesta
poster:SueInCincy
thread:479551
URL: http://www.dr-bob.org/babble/20050521/msgs/503344.html