FINALLY, a Drug for FMS!

#1

 

Here's a copy of a post I started in 'Our FMS Discussion'.  I thought it was sooo important, that I decided to post it here and anywhere else I can to get the message out:

>> Don't know if anyone's heard about this and I, for one, haven't spoken with my doctor yet, but you can read this for yourselves!

There's a brand new drug for FMS and it's called "Lyrica (pregabalin)" from Pfizer Inc., marketed on June 21st.  Here's an article prepared by the FDA called 'Living with FMS, First Drug Approved' at:

http://www.fda.gov/consumer/updates/fibromyalgia062107.html#approved

Be sure to look this over more than once so you and your doctor will understand if this is something you can use to FINALLY TREAT FMS!!!!!!! <<

GET THE MESSAGE OUT!!

SBernheart  [;}]

PS:  Sorry, but the editor failed to link the article to it's URL, so you'll have to 'copy and paste' the address in your address bar to view the article manually.  I don't know why it wouldn't work, but here's the URL regardless.  Thanks

 

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#2

Yes, I have heard about Lyrica but I am not sure if I will be asking for it or not. I have heard it is very expensive and that there are several possible side effects. I guess I will wait until more is known about it.

LupyFib

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#3

 

Hey, Lup, how 'ya doing?  I don't know about this either and I don't see my doctor again 'till August 2nd.  I do want him to look it over though.  I made a copy of the PDF version of the article for him to read.

Right now, I'm taking some of the usual FMS medications.  Neurontin (a pain and (I think) anti-seizure med for Restless Legs), Amitriptyline (to help me sleep), Synthroid (for my Hypothyroidism), Darvacet (for breakthrough pain) and all the prescription IBU's I can stand, but the worst part -- the part I can't stand -- is the 3-day patch I have to wear all day, every day, for maybe 6 or 7 years now.  It's the strongest strength, too.  I never used to even take aspirin for a headache, but now I'm on so much crap, I don't know if that makes me an addict now or what.  Not that this medication would be any different really.  I mean, it's easier to wear a patch and not have to worry about it being "time to take a pill", but it always seems that the patch is a tad too strong on the first day and too weak on the third, so would pills be any better?  Any stronger?

I don't know ANYthing about this new 'FMS' drug, but then again, ANYthing's better than NOthing, right?  If nothing else, it's a start.  Take a look at the winning videos for commercials for FMS and CFS I posted in 'Our FMS Discussion' group forum 'Winners of the P.A.N.D.O.R.A. 2007 International Advocacy Video Contest'.  According to 'Our FMS Discussion' group's forum page, it looks as though no one's even looked at the thread, not to mention reply to it.  I can't be certain what I see is even accurate.  I've had to send two Support Tickets to CarePlace because, on one of them, I had to tell them that I wasn't able to start ANY new topics and that applied to ANY forum in our group or ANY others!  Did anyone else have that problem?  Not that anyone was posting or replying, but that's not the point.

Ever since CarePlace 'updated' the site Friday, I've noticed a LOT of problems, not just with posting, but with our group picture, duplicate 'dummy' groups that appear to be started by our group but yet, I'm not able to delete them and a bunch of other stuff like problems with the 'Knowledge' tab, too.  The last ticket I wrote to Support I told them that I was too ill to fix my OWN stuff, let alone try to figure out what's wrong here -- especially when the site won't LET me fix anything!!  I'm not yelling at you, Lupy, even though it may appear that way.  LOL LOL  I'm just so frustrated with trying to make a good group that we all can enjoy and to take one more thing AWAY that we don't have to worry about, you know?  LOL

Anywho. I've ranted now and, as usual, went 'off topic'.  LOL  I just hope that this new drug does something for somebody or it'll be just another disappointment.  God knows we DON'T need another one of those!!!!  If anyone knows anything about this drug, I'd sure appreciate it if you'd reply and tell all of us about it, OK?  Side effects, like Lupy mentioned or strengths (if they have different levels of dosage) or anything you may have heard about someone using it, whatever, OK?  Thanks.........

SBernheart  [;}]

PS:  Speaking of 'kinks' in the new updated CarePlace, take a look at GG's reply in this forum in the 'Fibromyalgia Member Introductions' thread.  Look at page two, on May 17th, GG wrote about FMS and another particular illness.  FMS shows up as a 'Parent' and a 'Child' illness and the other illness she mentions several times shows up in FOURS!  I don't know WHAT that could mean.  The 'Knowledge' or the old 'Learn' tab mentions 'Parent' illnesses as well as 'Child' illnesses.  I never knew FMS to be a 'Parent' illness to itself, so I'm really confused!  Lupus, on the other hand, appears to be a 'Child', 'Parent', 'Grandparent' and 'Great Grandparent' to itself!  Does this seem right?  Sorry, GG.  I didn't mean to pick on your post.  You just happened to have a great example of what I was ranting about above!  LOL  So what happened?  Hmmm.....

 

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#4

Hi I don’t want to burst anyone’s bubble but Lyrica has been on the market for a few years. It was used to treat Diabetic nerve pain. I have been on it. Didn’t do a thing for me and the dizzy spells aren’t worth it. Blair

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#5

 

I hope I didn't mislead anyone.  I didn't mean to imply that it was a brand new drug, just new for Fibromyalgia.  I see my doc on Thursday and I've got a few articles for him to read and review for my next appointment.  I try not to bring him too much, too often.  If you do that yourself -- STOP!  The doctors HATE when their patients act like they know more than they do, but having said that, you DO have to keep on top of things that concern your illness.  No one else will do that better than you!

If the attachment feature on the journals is working (they don't sometimes), you can read the articles for yourself via my journal or the URL I posted here.  Talk it over with your doctor.  Not every medicine will work for every patient, so it just depends, if you know what I mean.  As far as I'm concerned, I already have most of the side effects mentioned, so I don't know if it will act 'the same' or exacerbate the problem.  I, too, will have to wait and see -- everything a Fibromite wants to hear -- AGAIN!  LOL LOL

SBernheart  [;)]

 

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#6

With no disrespect to anyone…people that take pain pills or pain patches for pain are not addicts…we are sick people that need certain types of medications that drug addicts like. theres a big difference between someone who is sick and taking meds and a so called addict. yes there are some people who abuse there meds but for the most part most of us are responsible in taking our meds properly. I read a article that really pissed me off…i wish i could of posted it here…the article stated that most people on pain meds abuse their medication…for eg. selling the meds…nnot taking as prescibed,taking too much or not taking enough. I disagree its not the majority its the minority of the people. Even tho i am physically addicted to my meds I am not mentally addicted to them…theres a big difference. Dr’s will have you believing that you are a drug addict…at least some of them…those are the ignorant ones…not good drs…not compassionate drs either. my mother suffered with MS for 15 yrs and she was only allowed to take one valium for her leg spasms and they were painful. When she started taking two the dr said that she could not…that two was too much and he didnt want her to get addicted. Well who gives a hoot when u are dying a slow painful death. I swear if the dr was alive today I would tell him a thing or two. unfortuneately my mother passed in 89 but she suffered so much because a dr did not want her to become a “addict”. A person in bed that could not move was left to lay there and suffer. this is why i dont have much faith in the medical profession. but i have to admit things have gotten a bit better for us chronic pain suffers but only in some states. love and peace lorial

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#8

Hi,

I got so excited when I saw this and my shoulders drooped when I saw it was for Lyrica. I tried it 2 years ago when I first was dx’d with Fibro, and it didn’t work for me. SO hopefully it will for some one else. I have gone through so many anti-inflammatories that my doc just sent me to my now ‘Pain management’ doc. I take the lowest dose of oxycodone when I get up every morning and thats it for the day. I still have my pain, but can deal with it better. Told my doc that I do not want to go any higher on the dosage and he totally agrees, but this was the only route for me since I also have the 3 herniated disks. ‘heavy sigh’

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#10

I tried the Lyrica too…wow talk about bed spins and other issues. Not the drug for me. I hope it helps someone with there fibro pain etc. But i have also heard so many try it and so many cant/wont take it again.

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