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    Old 09-09-2007, 06:26 AM   #1
    brugirl
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    Lyrica/new Fibro med

    Hi,
    My Doctor has started me on Lyrica 50mg. its the new wonder drug for Fibro, I am still on Topamax which I am slowly getting off from 400mgs down to 50mgs.right now.I also take Aleve and Lidoderm patches,thats all I can take for pain, due to Lupus Anticoagulant.(4 ) 81mgs. of aspirin a day for that.. I have MS. for which I take Copaxone shots.

    I have noticed some let up in the pain cycle with the new drug. I was in a real bad flare when I went to her and begged for something to help.I will slowly increase the dose as time goes on. Has anyone else started Lyrica and has it helped?

    Thanks for letting me share

    Kathy

     
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    Old 09-09-2007, 01:57 PM   #2
    jam338
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    Re: Lyrica/new Fibro med

    hi Bru, good luck with the Lyrica, hope it works great for ya! Please keep us posted on your experience with it since it is of great interest to many with all the commerical hype about it.

    FYI information sharing for those who may be interested in Lyrica. We need to be sure to do our homework and learn about this or any other drug before we completely embrace Pfizer's great marketing strategy and commercial hype. At the same time kudos to Pfizer for being the first pharmaceutical for giving public attention and awareness that this is a REAL disease/disorder! Thank you Pfizer!

    Here what I learned in researching Lyrica. Sorry for the long post, but for those interested I hope it will be helpful.

    While the TV commercials would like us to believe that Lyrica is a new drug; it is not. The June 21, 2007 FDA approval for Lyrica is not associated with it being a NEW drug. Instead, it is only a Phase II clinical trial approval for "re-labelling" Lyrica to include FM as a condition for which it may benefit; making it the first drug to be approved for "on-label" prescribing for Fibromyalgia. Lyrica has been prescribed "off-label" since its first approval in 2004 where it was approved for diabetic neuropathy and treating nerve pain associated with shingles. So an existing history regarding side effects and benefits anecdotally exists, even though Lyrica has not yet completed all side effect/benefit phases of the clinical trial process. FDA approval for a drug is given after successful completion of Phase II, which involves a test group of 100-300 individuals. Phase III involves 1,000-3,000 and will collect more side effect/benefit data from a larger test group. Phase IV will be even more comprehensive evaluation of side effects vs benefits. To learn more about U.S. government clinical trial phase requirements (Phases I-IV) [url]http://clinicaltrials.gov[/url]

    Much information can be gleaned through online research regarding the re-labeling of Lyrica to include FM. Of particular interest is a medical website article online by Michael Smith, a senior staff writer, dated November 16, 2006. The article is neither pro/con about Lyrica, but publicly presents the facts associated with the Lyrica study. Facts that readers must carefully evaluate and assess weight for themselves.

    The Lyrica trial was a 6-month two phase trial conducted by the University of Kentucky. The study was guided by a staff of 4, where 3 declared a “relationship” with Pfizer (the manufacturer of Lyrica). Pharmaceutical companies are common funders/underwriters of medical studies. That does not mean there is anything wrong with the drug or the process---it just means that patients must be aware that there is a marketing strategy at work designed to make us think something is new and wonderful and having us schedule appts with our doctors.

    The Lyrica trial was double blind controlled study. Phase I began with 1, 051 participants. After six weeks, 566 (60%) continued into the next 26-week Phase II process. Of note is that the lead staff researcher, Dr. Leslie Crofford, stated that roughly 40% of the original participants dropped out due to the fact that they couldn't tolerate the drug (side effects), they were lost to follow-up, or they reported lack of efficacy (no benefit). The side effects stated by the researchers were moderate dizziness (36%), somnolence (drowsiness) (22%), sinusitis, arthralgia (joint pain), and anxiety. I found their choice of descriptors quite interesting, but perhaps it just wasn’t written for the understanding of the layperson. I looked up the meanings and added those parentheses.

    In Phase II, a 26 week phase, the continuing 60% (566 participants) were divided into two control groups. 279 were given Lyrica; 287 were switched to a placebo.

    During my research to find out more about Lyrica, I found an online Message Board where patients rate drug benefits and side effects, post their personal experience, and give the drug a rating of 1-5. Lyrica received an averaged rating of 2.9 from among the ratings of 64 individuals (some FM). The side effects listed by patients included significant hair loss, weight gain, feeling disconnected, drugged, and/or excessively fatigued. I have no way of knowing why those side effects were not mentioned by the researchers. Perhaps it is because they considered them to be insignificant or rare. But, the 64 people posting on Lyrica didn’t consider them to be insignificant. And, with the number of people posting on it, I wouldn’t have interpreted that as rare.

    Other research I read online regarding the University of Kentucky Lyrica study, but unrelated to the Smith article, concluded Lyrica provided significant improvement in FM symptoms. While a yet different article took that conclusion to task stating that drug companies are allowed to claim significant improvement if over 30% of the test field notes improvement. I wasn’t a math major, but, doesn’t that also mean then that 70% didn’t get improvement?? Unquestionably, if you are one of the ones in that 30% group then it is very significant to you in deed. So far it seems like to me the process is like a prism, and depending on which you turn it is what colors one sees. It doesn’t mean anyone is wrong. All can plead a factual case for what they see. It is a gray area in how data is interpreted in presented to the consumer. And, consumer be ware. Of additional concern is an online warning on another website about abruptly stopping Lyrica. To stop the medication you must taper or risk potentially serious adverse reactions that could be a trip to the ER room. Some doctors have asked for manufacturer (Pfizer) warning, but thusfar Pfizer declines to do that.

     
    Old 09-10-2007, 05:11 AM   #3
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    Re: Lyrica/new Fibro med

    Hi Jam,

    Thanks so much for the information, I also looked up everything before I took the plunge. I am still taking Topamax which is also a dangerous drug to be on.I am only on 50mg. Lyrica and 50mg. Topamax, so far the only things I have noticed on Lyrica is I am very tired, but hard to tell the difference between the MS fatigue and the pills.I do feel my flare is better, but it could be times up on that!

    I wish pills and shots were not part of my trying to feel better, but at this point I guess I am willing to give some a try. I took 3200mgs. of Neuronton for yrs. and gained 60 pounds what a nightmare, hope to avoid it again.

    I will let you know if the pill does not work out for me though and I will keep looking for something without dangerous side effects, not likely to find it

     
    Old 09-11-2007, 03:45 AM   #4
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    Re: Lyrica/new Fibro med

    HI,
    I just want to say I've been on Lyrica for several months.
    I find Lyrica helps with my neuropathy..I take 150mg 3times a day.
    I also take Lodine 400mg three times a day, and Adderall to boost energy.
    The three medications do a pretty good job. Nothing is perfect..
    Iam having swelling in my ankles, and I believe it's from the Lyrica.
    I've recently changed doctor's, and will speak with him next month about it.
    But, I don't want to stop Lyrica, or Lodine...
    The adderall is God sent for energy,,but hasn't helped with my brain fog.
    Iam trying to work on my short memory skills on my own.
    I write alot of notes, and I use a timer when cooking or doing the laundry.
    I hate FM, but Iam learning to understand it, and move forward.

     
    Old 09-14-2007, 03:55 AM   #5
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    Re: Lyrica/new Fibro med

    Quote:
    Originally Posted by brugirl View Post
    I took 3200mgs. of Neuronton for yrs. and gained 60 pounds what a nightmare, hope to avoid it again.
    Yowza! 3200mgs/day!? They started me at 300mg/day, 100mg in the morning and 200mg at night. It worked for about a week. It's like a placebo now.

    I've been begging Kaiser for Lyrica, but they keep telling me "it's not in the formulary." I just did a check at the website and it is listed as being in the formulary for Medicare D patients! What's that all about? I'm calling my rheumy about that tomorrow.

    I called my PCP today in desperation, as I'm in the third week of a flare-up that started about a week after they put me on Neurontin. Last Sunday I slept for 20 hours. Even with my evening meds at 9:00 pm, I don't get to sleep until around 3:00 a.m. I get to work around 2:00 p.m., which is about two hours later than they'd like me there. Fortunately it's kind of slow right now.

    So, like I said, I called my doctor in desperation today and she agreed to take me off of Xanax for night-time anxiety and try me on Klonopin, which builds up to therapeutic levels and thus avoids the tolerance build-up and dosage creep. I've been taking Xanax since 1994, .5 mg at night, but in the past year I've increased to 1 mg, 1.5 mg, and now 2 mg. It's freaking me out.

    She seems to think that the 60mg of Paxil I take in the morning should handle all my anxiety. It doesn't. I'm sneaking it up to 80mg. Paxil is lame. I still get the dreads all day long for no good reason at all.

    I've also started sneaking an extra Neurontin at night, since they're giving me such a baby dose.

    My doctor just does NOT seem to GET the significance of my sleep issues! It's really driving me nuts! "I CAN'T get to sleep; I CAN'T wake up. I'm two hours late for work every day!" "Read a book or listen to soothing music." I read a book last night and stayed up until 3:30 to finish it.

    What do I need to do to get a sleep study? What's involved in a sleep study? Do they let you take your normal meds or do you have to tough it out? Do they put you to bed at, like, 8 p.m. and try to wake you up at 8 a.m.? I'd like to see them try that. I'm dead at 8 a.m. My boyfriend brings me coffee and breakfast, and I go back to sleep for "five more minutes" and wake up around 2 p.m. Yuck.

    Nikki

     
    Old 09-15-2007, 03:12 AM   #6
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    Re: Lyrica/new Fibro med

    Just wanted to let you know i have been on Lyrica for about 15 months now and have gained about 35lbs in that time, my doc reckons its the antidepressant but not taking that made me soooo anxious

    I hope it works for you and I so wish we had a cause of it all

    angel hugs
    connie

     
    Old 09-15-2007, 04:07 AM   #7
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    Smile Re: Lyrica/new Fibro med

    Hi Kathy,
    I suffer from severe nerve pain and am on 75mg of Lyrica 3 times a day.I find it pretty good but it wears off quickly.Unlike other meds I've been on,if you forget to take it,the pain comes back!!! I've been on it now for about 8 months,no side effects that I can tell,
    Robyn29

     
    Old 09-15-2007, 06:23 PM   #8
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    Re: Lyrica/new Fibro med

    I think since I've been on antidepressants since 1989 I've pretty much gained the weight I'm going to.

    I found out that Kaiser DOES have Lyrica in their formulary, but only for Medicare D patients! I'm working on finding what that's all about (and getting it changed).

    They've changed me from Xanax to Klonopin because I've been taking the Xanax since 1994 and had to increase my dosage three times in the past year. I needed something with a longer half-life.

    Nikki

     
    Old 09-18-2007, 10:57 AM   #9
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    Re: Lyrica/new Fibro med

    Hi Nicki -

    Can you try flexiril (generic cyclobenzaprine) for the sleep disorder? i also take Klonopin to help with the pain and anxiety. Zoloft for well, the pain, as well. I had to keep going up on the Zoloft before it began to help. Originally I was on amitriptyline but got pregnant so I began the flexiril. It works well for me.

    Good luck,

    Sheri

     
    Old 09-18-2007, 03:00 PM   #10
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    Re: Lyrica/new Fibro med

    Quote:
    Originally Posted by sheri44 View Post
    Hi Nicki -

    Can you try flexiril (generic cyclobenzaprine) for the sleep disorder? i also take Klonopin to help with the pain and anxiety. Zoloft for well, the pain, as well. I had to keep going up on the Zoloft before it began to help. Originally I was on amitriptyline but got pregnant so I began the flexiril. It works well for me.

    Good luck,

    Sheri
    That may be my next option. I'm up to 80 mg Paxil. The Klonopin's working okay so far, but I seem to adapt to every treatment they try.

     
    Old 09-21-2007, 06:06 PM   #11
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    Re: Lyrica/new Fibro med

    I was dx with fibro and CFS and find the hardest thing to deal with is the fatigue and inability to function like a normal 35 year old mom. My neurologist has tried numerous medications, so far the only one that has helped a little has been Amantadine.

    He expressed last week that he felt I was taking too many pain meds and wanted to try a pain preventative. I was surprised as I've been coping ok most of the time with the pain using Exedrin Migraine and most days need to take 2, but considering other pain meds I could be using I thought something over the counter wasn't an issue.

    He prescribed Lyrica, after fighting with the insurance company I was finally able to pick it up and took it Sunday night, Monday felt same as normal, took it Monday night, Tuesday morning was same as normal, but then in the afternoon I just didn't feel right, dizzy, off balance, more like a flare up.

    Still I took it Tuesday night, I wish I hadn't, I woke Wednesday feeling awful, totally detached and lightheaded, but not in the way I get when I'm having a flare up, this was just weird, zombie like and bad enough my husband told me I wasn't to drive because I was stumbling like a drunk.

    Needless to say I stopped taking it, 24 hours later I'm getting back to normal, regular debilitating fatigue but at least I can manage it somewhat.

    Right now I'd be happy to deal with the pain as I have been, it's the fatigue I want to get help with, but so far I've had bad reactions to all meds tried.

     
    Old 09-27-2007, 09:52 AM   #12
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    Re: Lyrica/new Fibro med

    Hi Kathy,
    I take Lyrica...and it does help.
    It has not been the perfect drug, but does wonders.
    I take 150mg three times a day. I also take 200MG of Lodine.Two capsules twice a day. i fine spreading the medicaiton out over the day gives me better coverage. The combination of the two drugs are amazing..I still have hard days, but at least i can function.
    I also take Adderall once a day. I use this medication for energy.
    Boy does it work. i would be lost without Lyrica, Lodine, and Adderall.
    I still struggle with neuropathy, but do get relief with the Lyrica.
    lyrica is used for FM and neuropathy. nothing is perfect, but at least you can live a normal life (whatever that is)
    As far as brain fog..the adderall has not helped. i get very frustrated with my short term memory lost. Still working on that one.
    Good luck to you with Lyrica etc.
    All we can do is take one day at a time.
    PAM

     
    Old 09-27-2007, 09:59 AM   #13
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    Re: Lyrica/new Fibro med

    Hi Louissa,
    Have you tried Adderall for some energy.
    I FM and struggle with being so exhusted.
    I now take Adderall once a day.
    For me, it's been a miracle drug. I am really starting to feel like my old self in the exhustion area.
    Iam still struggling with short term memory loss..
    I also take Lyrica, and Lodine for pain and neuropathy. It works pretty good. Nothing is perfect, but as long as you can get around and feel pretty good it's good enoug for mr.
    Of course we all struggle witht he daily ups and downs i life.
    But we have to keep going.
    PAM

     
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