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FMS Forums › Medicine & Treatments › Xyrem?
05/18/2010 01:20 PM
RedGirl
 
Posts: 1594
Senior Member
I expect this has been discussed before but can't now figure out how to properly search it. I understand Xyrem is a med to treat narcolepsy. A friend of mine sent me an e-mail about the possibility of using Xyrem for treatment of fibromyalgia. Has anyone tried it or know anything about it?

Thanks much if this has already been discussed over and over and over!

Thanks much anyway!

Hugs and more hugs,

Red

I am not a doctor or a lawyer. Any comments, posts, or responses I might make are made solely from my life experiences and are not intended in any way to be medical or legal advice so please do not take it as such.

"Nothing but heaven itself is better than a friend who is really a friend."
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05/18/2010 02:34 PM  Top
Survivor19
Survivor19
 
Posts: 19
Member
Hi RedGirl, I was prescribed Xyrem as a sleep aid. This is actually GHB, the date rape drug. It is a highly controlled substance. I took the highest dosage for a couple of months but was not helped by it.

My rheumatologist prescribed it.


Previous discussions I participated in:
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05/18/2010 02:47 PM  Top
RedGirl
 
Posts: 1594
Senior Member
Wow! This is really GHB??? My daughter was recently prescribed this for suspected narcolepsy. I just got a forwarded e-mail from a friend. That e-mail talked about people with FM being helped by Xyrem. Sounds like a kinda scary thing to take to me!

Red Sad

I am not a doctor or a lawyer. Any comments, posts, or responses I might make are made solely from my life experiences and are not intended in any way to be medical or legal advice so please do not take it as such.

"Nothing but heaven itself is better than a friend who is really a friend."
Plautus

"The language of friendship is not words but meanings."
Henry David Thoreau

"Life is hard. After all, it kills you."
Katharine Hepburn

05/18/2010 06:19 PM  Top
Auntie3285
Auntie3285
 
Posts: 9086
VIP Member
I'm an Advocate
Hi Red,

I have heard/see advertised Xyrem but never taken it nor known anyone who has .

Maybe you could type Xyrem in the search box at the top of this page and see what it brings up ~~~~

Marilyn

05/18/2010 06:29 PM  Top
raynedae
raynedae
 
Posts: 8219
VIP Member
I attended a function that was led by the Dr. who supervised one of the studies of Xyrem for fibromyalgia. He said the results were good, that it provided a good quality sleep and that the subjects reported a big decrease in pain, exhaustion & daytime sleepiness. That was in December and he said the FDA should approve it for fibro soon. I read an article that said the manufacturer's stock has jumped 500X in price.

However one member here reported she tried it and her husband found her slumped in her wheelchair & she needed to be resuscitated.

I know it works so fast that you're supposed to take your first dose in bed. But you set an alarm to wake you later to take the second dose. That just doesn't appeal to me.

rayn

I am not a medical professional so please exercise common sense when it comes to my advice.

I am also NOT a lawyer so exercise common sense when it comes to my advice.

I was a bookseller so you can trust my advice regarding books :)

www.operationbeautiful.com

05/29/2010 07:00 PM  Top
MissStacey
MissStacey
 
Posts: 14847
VIP Member
I'm an Advocate
I have Narcolepsy but will not touch Xyrem with a ten foot pole!!!!
I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.

"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."

I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey

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