Xyrem, it works!

rfishburn · Post by **rfishburn** » Mon Jul 31, 2006 2:37 pm

I would like to hear more Xyrem stories and how people are doing on this. Lyrica is working good now but I do not like the mental dullness and would like to convince my doctor to put me on xyrem for a while and see what happens.

coaster · Post by **coaster** » Mon Jul 31, 2006 9:27 pm

GHB, eh? I looked into this about 10 years ago to improve my sleep cycle, and I thought that since then the FDA banned it as a date-rape drug. (which was all a bunch of BS, but then you can't fight the government)

I just googled it: I see Xyrem is a Schedule III controlled substance. Good luck getting a doctor to prescribe it.

Post by **ViewsAskew** » Mon Jul 31, 2006 10:14 pm

I think you're right Coaster - I asked my doc about (the one who has NO trouble handing me Methadone) and he looked at me like I had two heads! I whipped those heads between my tails and never mentioned it again. :wink:

rfishburn · Post by **rfishburn** » Mon Jul 31, 2006 10:52 pm

I am expecting the same reaction, my neuro won't bat an eye at giving pain meds......who knows. Hoever I did use it with great success before it was banned. It's a shame.
Just reading what your doctor has to go thru to get this perscription I seriously doubt most will put in the effort to get it done. It's worth a shot till something better comes along anyways.

rfishburn · Post by **rfishburn** » Wed Aug 02, 2006 11:30 pm

Interesting, my neuro office called to reschedule an appointment and I mentioned xyrem in passing after talking to the doctor he offered to get me in and give it a shot. With the weight gain on the lyrica he had no problem with trying an alternative.

ksxroads · Post by **ksxroads** » Thu Aug 03, 2006 3:18 pm

The FDA issued a warning a year or so back, you can do a search at the drug manufacturers site or on the FDA site, that xyrem was NOT to be prescribed off label as there was an abnormally high count of people without seizure problems experiencing seizures with Xyrem... some with first few doses, others after months of use. Just my two cents... Hazey

necron99 · Post by **necron99** » Thu Aug 03, 2006 7:31 pm

I know for a fact that many of the siezures were because of overdoses. There is a very steep dose response curve to xyrem, and I have seen first hand people who had taken a high dose before there last dose had worn off, and this resulted in them goign into seizures. Fortunatly they had no health issues or injurys because of it.
I do believe though, that there is lttle risk of seizures when dosage is carefully monitored. I had used ghb for insomnia on and off for 6 years, and I had no health issues at all from it. I was very carefull of my doseing, and never doubled up a dose if the first one didnt put me to sleep.
I do wonder if using GHB for those years kept my RLS in check with out me ever realizing it. THe reason I think this is I remember it being a problem all my youth, but when I turned 19 I started to use it for insomnia, and I rarely had symptoms for the next 6 years. Unfortunatly GHB it is illigal now and I have a feeling xyrem will be the last on my list of meds available to me.

ksxroads · Post by **ksxroads** » Thu Aug 03, 2006 8:02 pm

When I was at the beginning of my RLS treatment search, last July, I was referred to a Rheumatologist who diagnosed fibro, and told me he had no experience with RLS.

Xyrem was the medication he prescribed for the fibro. Maybe I should have tried it... but I was sticking to the Mayo Clinic Algorithm at the time and had been through enough medication side affects that when I read the FDA warning restricting its off label prescribing... I just threw it away...

Hazey

rfishburn · Post by **rfishburn** » Thu Aug 03, 2006 8:43 pm

I used it for several years without any issue also...as for off label use not being allowed, could someone provide a link, I thought being moved from sched 1 to 3 allowed for off label use. My doctor is giving it to me off label and even though he perscribes pain meds regularly he follows regulations closely, he would not give it to me if it were obviously not allowed for off label use, nor would I want him to get into trouble for doing so....anyone?I am on the FDA site looking now.

ksxroads · Post by **ksxroads** » Thu Aug 03, 2006 9:09 pm

My first post was recalling what I had read last July on the Xyrem website... now you know how recall can be maybe it was worded it is strongly suggested not to prescribe off label! Here is the page for Xyrem...
http://xyrem.com

here is the info on FDA
http://www.fda.gov/bbs/topics/ANSWERS/2 ... 01157.html

I seriously doubt that your dr would prescribe something they shouldn't...
Hazel

rfishburn · Post by **rfishburn** » Thu Aug 03, 2006 9:18 pm

Thanks Hazel, I appreciate the response.
This is just exciting for me, since I used it successfully before it was banned. To bad all of the abuse that makes things hard for those of us with legitimate uses.

ksxroads · Post by **ksxroads** » Thu Aug 03, 2006 10:17 pm

You certainly spoke the truth in that statement. That is why it is so important to continue to stress to our doctors, others, that studies indicate that people with chronic illness seldom become addicted to their medications, nor abuse them, they may become dependant which is entirely different.

Sorry about the confusion, that usually happens when I talk off the top of my head...

Hazel

rfishburn · Post by **rfishburn** » Thu Aug 03, 2006 10:35 pm

I am no one to raise an eyebrow at confusion, among other things

coaster · Post by **coaster** » Thu Aug 03, 2006 11:44 pm

Sorry, but I'm a newbie here -- what's this "Mayo Clinic Algorithm" I've seen referred to a couple times? Can sometime provide a link, please? Thanks....

Post by **ViewsAskew** » Thu Aug 03, 2006 11:53 pm

coaster, go to the New to RLS? section, then open the "sticky" at the top about managing RLS. It's in there along with a LOT of other great links that may help. The second sticky also has some great links, too. Check them both out.