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11/28/2009 01:40 PM

Looking for shared experiences on Xyrem for Fibro

electricmayhem
Posts: 3
Member

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

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11/28/2009 03:19 PM
aTinaL
aTinaLPosts: 11832
VIP Member
I'm an Advocate

EM, I wish you the best of luck with this thread. I've heard the drug mentioned, but I honestly can't recall anyone that's on it. Hopefully they're out there and they will respond Smile

11/28/2009 04:36 PM
raynedae
raynedae  
Posts: 8219
VIP Member

I don't think anyone here has tried it. I was called about a study but they made you give up all your meds for it and I said "no thanks". I did recently hear Dr. Bennett say that the study had gone well and the DEA would be approving the drug for fibro soon.

12/11/2009 07:26 PM
Melissa32
Melissa32Posts: 4
Member

Hello,

My name is melissa and I have been taking xyrem now for 6 weeks, I was prescribed it for "narc" but I have fibro as well.

I have noticed that my pain is almost gone. I do have some side effects associated with the use of this medication, such as.

Joint pain, confusion, lack of concentration, photosensitivity, tackycardia, dizziness. I have had some nausea with it at night but not much. All in all I like the medication, it helps with the major pain, and I sleep! which is something I have struggled with for years! I can function on the first dose, but the second one puts me out like a light!.

Are you taking this medication?

Hope this info helps you

Melissa Tongue


12/11/2009 09:48 PM
raynedae
raynedae  
Posts: 8219
VIP Member

Melissa it hasn't been approved yet for fibromyalgia so most insurance companies won't pay for it for fibro. I'm about to take part in a fibromyalgia study and the dr in charge told us that they'd just sent the paperwork to the FDA for Xyrem and it should be approved shortly Smile

I doubt I'll take it. I had to move mountains just to get Cymbalta and I live alone and am afraid of something that knocks me out so completely...I won't even take Ambien.


12/12/2009 03:43 PM
quitpeekin
quitpeekin  
Posts: 152
Member
I'm an Advocate

i used it for a very short time due to adverse reactions...it did little to nothing for me...but as i said i was on it only a matter of days

12/21/2009 10:03 AM
electricmayhem
Posts: 3
Member

Hi there,

I'm on week 4 and, with the exception of a few nights of bad nausea when I couldn't fall asleep and some major muscle cramping that I can control with extra magnesium, I am tolerating it quite well. I haven't noticed a decrease in pain yet, but my Dr. tells me it could take anywhere from 6 months to 2 years to get the max benefit. Glad to hear it's working so well for Melissa! That's definitely encouraging.

I find I get about 3.5 hours sleep with the first dose and 2.5 with the second. More would be better, but I may not be at the right dose yet.

It's not nearly as scary as I thought it was going to be. I actually don't mind taking it (thank you Crystal Light pink lemonade) and look forward to going to bed. Can't wait for the day I'll get out of bed feeling refreshed and ready to go back to my full-time job.

Hopefully the approval will come in soon and the price will drop back down to where it was before they started testing on fibro. I read somewhere that they've increased the price 300% just in the last six months. I'm covered, so I'm very lucky, but I feel for those who are suffering because of the new testing. With 5-7 mm people in the US with fibro alone, compared to around 150k pwn, they won't be able to get away with that for long. Especially for a drug they didn't create. Fingers crossed!

Good luck everyone!


01/04/2010 06:07 AM
Melissa32
Melissa32Posts: 4
Member

raynedae,

Hopefully the approval will come soon, so that all those people in pain can try it and see if it will work for them. As for the not taking it because something could happen girl, I feel you on that front it is scary but I wake up to an alarm on it, I function on it I might not remember what I have done or said but If something like a fire were to happen I have no doubt I would wake up and get out of the house! so if it will help you even a little I say get a friend to stay a cpl weeks with you, then throw caution to the wind and dive head first, praying the whole time please let it work, so good luck I will keep you in my prayers. many blessing to you

electricmayhem,

I have had the nausea too, not everynight but a few. I take mine at 930ish and then again at 130ish I am begining to wake up at the 130ish time so I found that time to work for me. Can you play with the times on the trial? or do you have to take it at specific times? I commend you taking it with Pink Lemondade I couldn't stomach it.... I shot mine with the small abmount of H20 then down a bottle of H2O LOL. The longer I am on it though, my pain comes and goes and the other symptoms of the fibro are still here like most days I have the brain fog and the feeling tired (not as bad as before the meds)! I am hopeful though.

Now as for cost yes, they will have to bring it down to a reasonable price. The problem is that there is only one yes ONE lab in the whole of the United States that supplies it. So until others can make it they have us.

I hope that they approve it for Fibro patients, and I hope the cost comes down drastically, and I PRAY for everyone to be pain free!!!!

Many Blessings to everyone

Melissa


01/04/2010 06:30 AM
MissStacey
MissStacey  
Posts: 14845
VIP Member
I'm an Advocate

I dont know many people taking it for pain but know alot of people taking it for Narcolepsy. If you want to read some opinions on it you could peek over into my Narcolepsy Group and read some of the posts/threads and even ask some questions. The members are great over there and would be willing to share their stories. Again it wouldnt be related to pain but at least it would give you a better idea about the drug itself. You can also type Xyrem into the search box that will bring up previous posts on it. Best of luck. Stacey Wink

01/09/2010 11:28 PM
raynedae
raynedae  
Posts: 8219
VIP Member

The real reason why I said no to that study was that I would have had to quit all my meds. I could have Lyrica and Xyrem and that's all. Since Lyrica had already failed, I wasn't interested.

Dr. Campbell was very enthused about the results of the the study and said that the FDA approval is due very soon, and that was a month ago.

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