ANYONE TRIED THIS BRAND NEW MED????

Discussion in 'Fibromyalgia Main Forum' started by beachinkw, Apr 28, 2003.

  1. beachinkw

    beachinkw New Member

    IM ACTUALLY NEW TO THE BOARD, BUT I READ THE MESSAGES OFTEN AND CAN RELATE TO SO MANY OF THEM. MY QUESTION IS THIS THOUGH - MY RHEUMO WANTS TO START ME ON A BRAND NEW MED THAT IS SUPPOSED TO BE A "MIRACLE" MED FOR TREATING FM. HE SAYS THAT THE STUDIES ARE SHOWING GREAT RESULTS AND GIVING MANY SUFFERERS BACK THEIR LIVES OR AT LEAST GIVING THEM SOME HOPE OF NORMALCY. THE MED IS CALLED ZYREM. I COULD NOT FIND ANYTHING ON THE WEB ABOUT IT AND WONDERED IF ANYONE OUT THERE HAD HEARD OF IT OR TRIED IT. IT WILL BE AT LEAST A MONTH OR TWO BEFORE I ACTUALLY START ON IT SO I WON'T BE ABLE TO GIVE ANY POS OR NEG FEEDBACK FOR A WHILE. ANY INFO ANYONE COULD GIVE WOULD BE MUCH APPRECIATED. THANKS IN ADVANCE!
    KATHRYN AT BEACHINKW@AOL.COM
  2. nancyneptune

    nancyneptune New Member

    Never heard of it. I hope it helps. Don't forget to let us know. Hey at least your rheumy is willing to try. Mine says he can do nothing for me, the putz.
  3. JaciBart

    JaciBart Member

    Never have heard of it but please do keep us posted, I could ask my pharmacist, in fact I will & see what I can learn.

    Jaci
  4. IndigoSC

    IndigoSC New Member

    I've never heard of it either, what kind of med is it? Is it a pain med or muscle relaxer or anti-depressant or what? Thanks!
  5. IndigoSC

    IndigoSC New Member

    Hey again, I looked it up and it is a drug for the treatment of narcolepsy...I tend to have the opposite problem though, not being able to sleep...not narcolepsy, where you fall asleep a lot...did you have a sleep study done?
  6. beachinkw

    beachinkw New Member

    thanks indigo and others for replying so quickly!

    i do believe it is spelled xzyrem - the sleeping remedy mentioned by a few replys. i'm sure the nurse could not read the docs writing at the time she spelled it out to me. gee, now there is a surprise!!

    i will be having a sleep study done by the end of may. the rheumo said that he will be looking for a certain alpha wave that only FM sufferers have, or lack of I quess. he has me on Ambien right now and it does help me sleep through the night but i wake up drenched in sweat most mornings. it does kind of give me about a half hour of "goofiness", for lack of a better term, before i go to sleep at night. kind of a nice reprieve after feeling like crap all day.

    a few docs have had me on zoloft and the like but i don't like the side effects it caused. i'm also going through surgically induced menopause and they cannot quite get my hormones right yet so i go through some wicked mood swings. my gyno just put me on a milder anti-depressent to try to help that; not supposed to have as many side effects as zoloft - we'll see.

    i take lortab 10 for the pain, when i can get it. without it, it is almost impossible to get going in the am - pain and stiffness are almost too bad to allow me to stand for any length of time in the am even to get a quick shower. i have relied on internet rx sights when desperate as rheumo is kind of stingy with pain meds. he is kind of an abrupt doc, last one i have seen after going through the usuall family md, gyno, ortho, neuro, etc., and as he said recently, "the buck stops here". I don't think he was being smart, but i know that if this new med zxyren he wants to try does not work, i'm pretty much out of options. the one thing in my favor is that his own sister has FM and he does understand how bad it can get.

    my rhemo doc did tell me one interesting fact that i had never heard before in all my FM reading and research. he said that FM is definately hereditery and that my grandmother most definately had it and possibly my mother. he also stated that my grandmother was probably somewhat reliant on alcohol and that i was predisposed to nicotine addiction but not alcohol or drug addiction. i can't verify the grandmother and mother part yet because i was adopted at birth. i do know my birth parents are still married and actually live very close to me here in town. i plan on addressing that situation later this summer perhaps; right now the symptoms of FM are enough to handle. I'm going through a flare right now but this time it pissed me off enough to go ahead and enroll in Nursing School as i had planned a year ago. i cannot, or won't let this stupid illness stop me, if i can help it - i'm only 37 and still have another half of my live to live! i do have great admiration and respect for those of you trying to raise children and hold down jobs with this illness - i don't know how you do it. i cannot have children, but just taking care of my pets and husband on a daily basis is exhausting - of course my pets are also my therapy when i am really down, so i don't mind that much.

    well enough ranting and raving just to send out a simple thank you. i will keep everyone posted on how this medication turns out in a month or so. i will keep my fingers crossed so that everyone might, in the near future, be able to benefit from it's so called "miracle effect".

    thanks again! beachinkw

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