New Xyrem User looking for share experiences

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electricmayhem
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/28/2009 4:11 PM (GMT -7)   
Hi folks,

I'm new to the boards, but have spent some time searching the archives and thank everyone for the helpful information.

I've recently started Xyrem and I can't seem to find consistent detailed information on success/failure from many people.

I was hoping that in this thread, people would be willing the share the following details about their experience.

1) What side effects did you have and how long did they last?

2) How quickly did you begin to feel to relief in pain?

3) If you have achieved total relief from pain, how many months did that take, and what would you have rated your pain (1 - light, 10 - worst) before you started.

4) if you haven't achieved total relief, how far have you gotten in terms of a percentage reduction?

5) Were you working before you started Xyrem? If not, how soon were you able to go back to work (please specify FT or PT)?

6) Has anyone who has achieved total pain relief attempted to go off Xyrem, and if so, was your sleep still sound? Did your pain come back, and if so, how quickly? I ask because I've seen a couple of posts from people who said it seemed to reverse their insomnia permanently after stopping, but my Dr. told me he had a patient who fully recovered in six months, but relapsed after she stopped the meds.

I realize that's a lot to ask, but I would very much appreciate your time. I'm sure it will also end up being helpful to a lot of newbies googling like crazy trying to find these answers. Thanks!

Best of health to everyone,

EM

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 11/28/2009 7:03 PM (GMT -7)   
Hi there EM. I think I'm about the only one here that takes xyrem. I have been on it for almost 3 years now but don't think I can answer all your questions really. I have some comments though. I am allowed 3 grams per night but usually only need to take 1.5 grams per night to get a good night's rest. I haven't had any side effects except for the one time the dr told me I could take the full amount at once. I am apparently very sensitive to it because I couldn't walk to the bathroom an hour after taking it and had heart palpitations. Within a half hour I felt better but it was scary while that lasted. Once we got the right dosage down for me which took about a month, it has been no problem. I can't really tell you how quickly I had pain relief. The first thing I noticed after the first month was that I felt better in general, less fatigue, more upbeat because I was sleeping well for the first time in forever. Pain-wise I am doing better now than before taking xyrem but I can't say all of that came from the med because I do lots of other things such as other meds, chiropractic care, massage and exercise. The med is not going to take your pain away. It helps you sleep properly so your body has a chance to heal itself during deep delta sleep which it promotes. It is not a cure all for fibro pain but as your overall healing improves your pain should decrease because fibro seems to like to feed off our hurt or vulnerable areas, at least for me. Sorry I can't be specific on the percentage of relief for you. I wasn't working when I started it so can't comment on that either. There are nights when I have had dinner too late or wanted to go to bed too early to take the xyrem on an empty stomach so go to bed without it. Some nights I don't do well but most nights after being on it this long I do pretty well and feel OK and functional the next morning. I hate to say this but I think your expectations may be a bit too high about xyrem but I hope that I am wrong in your case. If you have more questions please ask. I may be able to help. Good luck with it and take care. Lisa
If I can laugh at it, I can live with it.


electricmayhem
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/29/2009 4:39 PM (GMT -7)   
Thanks for your reply GG!

I appreciate your candor. My doctor tells me that it's my best shot at "recover" and I see many posts from people saying they were pain free within a matter of months, but I knew that seemed to good to be true.

That said, I'll take what benefit I can!

Thanks again,

EM

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4646
   Posted 11/29/2009 5:48 PM (GMT -7)   
There's an article in Wikipedia about Xyrem being marketed for off label uses illegally, and another section teing that it's a schedule 1 drug as dangerous and highly addictive and having no use, and also on schedule 3 as safe when used properly.

I think I'd be reading a whole lot and maybe waiting before using this med. I don't trust testimony.
Alcie
 
 


electricmayhem
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/29/2009 6:48 PM (GMT -7)   
Thanks Alcie. I've done quite a bit of research on this, spoken with numerous professionals, and understand the side effects and risks (which are no different really than any other drug on the market). I must say, Wikikipedia isn't exactly known for accuracy. Even it's creator admits his own entry contains multiple errors.

There's an unfortunate stigma on Xyrem because, yes, it's GHB or "the date rape drug", but when properly regulated and controlled, there's no reason people shouldn't get the numerous benefits from it (and there are many). So, just as you have encouraged me to read more about dangers, I would encourage other fibro sufferers to learn more about benefits. It's a totally natural substance and has been around for years and used to be sold OTC. Yes, it was taken off the shelves b/c the FDA believed it may have been being used for date rapes, but again, if used responsibly...why not try it and see if it can give you a better quality of life? I've yet to see one drug for fibro that doesn't have abuse/addiction potential.

Thank you very much for reply. Best of health to you.

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 11/29/2009 7:01 PM (GMT -7)   
Doctors have the legal right to use and prescribe meds for off label use. Xyrem is a drug that is in clinical trials to be used on label for fibro. The drug is like any other drug in that it is safe when used properly. It is not addictive and there is no tolerance or dependence issues when used as prescribed. If it was addictive I wouldn't be able to not take it for several days in a row due to timing issues and not go into withdrawal. That has never happened to me. You can't say that about all of the other drugs that fibro patients are taking.

EM, my experience may not be what you will experience since everyone's body is different and I hope the best for you. You may get wonderful healing during sleep and thus pain relief that you can attribute solely to xyrem. No drug is a sure bet for everyone and xyrem is like that also. I just wanted you to be aware of the possible realities so you don't get your hopes up so high and crash so low when if it doesn't turn out to be your miracle. Reality does indeed suck sometimes. If it was "the answer" for fibro I wouldn't be the only one on here that takes it. Having said that I do wish more people here would consider trying it because it has been helpful to me. It is another tool in our arsenal to combat this problem. Please keep us posted on how it goes for you. Take care, Lisa
If I can laugh at it, I can live with it.


electricmayhem
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/29/2009 8:06 PM (GMT -7)   
Couldn't agree more, GG! I am glad to hear your experience as it fits more in line with what I am expecting vs. what I may have been told. You don't get sick overnight, so why would you get well over night, right?
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