XYREM

rfishburn · Post by **rfishburn** » Tue Nov 28, 2006 11:56 pm

Frustration is setting in...after being sick and being off xyrem for a bit my knees were better, now been back on xyrem and at a lower dose and the tendonitis is back full force. I really don't want to call the neuro, he had been a little frustrated that everything seemed to not work or side effects were too much for me.

Post by **ViewsAskew** » Wed Nov 29, 2006 7:36 am

I am glad to hear you know that cause. . .sorry that it's the drug. How frustrating for you. Randy, I can't remember your history - sounds like you've tried the DAs, benzos, etc. and none work or cause problems. Em is having the same problem and her RLS is very severe. How severe is yours? It might be interesting for the two of you to compare notes. Who knows? Might not help but it could...

rfishburn · Post by **rfishburn** » Wed Nov 29, 2006 4:09 pm

Strange enough the painfull daytime symptoms very mild and random now...I wonder if getting off all the narcotics and benzo's helped mediate those symptoms. I assume it's back to narcotics if I cannot tolerate the xyrem. Or maybe alternate them and let the knees recover for a month before going back to xyrem. Sometimes it does feel like the end of the rope after you've done the DA's, benzo's, narcotics and seizure meds...I did not take it last night though and even though I am tired I generally feel better today.

Anonymous · Post by **Anonymous** » Wed Nov 29, 2006 5:38 pm

Sojourner · Post by **Sojourner** » Mon Jan 15, 2007 7:45 am

Wondering if there are any recent Xyrem update from anyone who has been taking it for a while.

M.

rfishburn · Post by **rfishburn** » Tue Jan 16, 2007 2:54 pm

it works alright but I have to alternate one month on one off in order to keep the tendonitis down in my knees.

Sojourner · Post by **Sojourner** » Wed Jan 17, 2007 4:48 am

Randy,

How long have you been on the Xyrem altogether?

Post by **ViewsAskew** » Wed Jan 17, 2007 6:23 am

So far, I only recall one or two people (on three different RLS boards) saying that xyrem worked well for them. When Randy mentioned it, I was excited about it. But it sounds like it was tough to get to a good dose and had lots of side effects. Maybe, like a lot of things, it works better in smaller doses.

I'd also love for anyone else it's worked for to chime in!

rfishburn · Post by **rfishburn** » Wed Jan 17, 2007 2:52 pm

Since september of last year I think. It actually does real well for the sleep but I get this tendonitis. I called xyrem and according to them 5 percent of the people taking it get some sort of localised pain or tendonitis. If I alternate one month off and one on I do well. Thats probably why I have not posted in a while. For most I have talked to it is hard to find the right dose, to little and your stoned for 4 or 5 hours, to much and there are many side effects, including the tendonitis. Others for me have included waking wiht my nervous system so reved up I can barely drive straight....Interesting stuff to say the least.

Sojourner · Post by **Sojourner** » Thu Jan 18, 2007 5:36 am

Randy,

Thanks for the feedback. As you have been away, sounds like good things may be happening. Glad to here that and hope it continues well for you.

rfishburn · Post by **rfishburn** » Tue Jan 30, 2007 11:22 pm

I would like to say they are better but I have kind of resigned myself back to ultram . I tired the xyrem again and the first 3 days were actually great but day 4 came the hurting knee's...Right now I am tired and in pain and frustrated since I can't refill the ultram till the 5th.

Sojourner · Post by **Sojourner** » Wed Jan 31, 2007 4:57 am

Randy, Guess I don't remember but did you try Lyrica as one of the "seizure" drugs you tried? Is there anything that worked in the past that you can try to cycle throught again? Sorry, things are not clicking just now. Will pray that the future will bring better success.

rfishburn · Post by **rfishburn** » Wed Jan 31, 2007 2:50 pm

Lyrica was actually great for my rls, but I gained about 20 pounds and my wife said I was extra cranky...Ultram was good so I will probably just go back to that. Thanks for the reply, I think it helps for me to vent every now and then.