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Old 08-22-2005, 08:43 AM   #1
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New Drug for fibro????

Hello There,

Any information would be appreciated on this question. Thanks in advance.

My dear cousin was diagnosed with fibro a little while ago, she is really uptight and won't allow herself yet to share how she feels about it. It is her own "thing" and so I must bide my time before she accepts that I too have it, and am only trying to help and advise. I have to walk on eggshells with her at times, so I tend to let her think that things I say to her are her idea. She is a wonderfully warm person with a heart of gold, but anything physically wrong and she speaks as though nobody knows but she what it is like to have the pain. She copes her way, and so I must respect her wishes -for a while he he !! I don't say that with any form of malice, it is just the way she is. I don't take offence though because I know it is new to her and she has to come to terms with it and work out how to be open about it in her own way. I am there for her whatever though. I have asked her to join us here but she is not pc friendly.

Question : Have any of you taken a drug named Pregabalin (I think this is the spelling) for your pain? My cousin has been told - here in the UK - that it is not approved yet by our own licensing board. She can have it - maybe - but a monthly prescription will cost a small fortune. She was told it is approved in the US, but it will take time to be distributed here by our GP's.

Any input would be of help, and then I can let her know what my friends here say about it. I have to tread very carefully, so that I don't come across as a know-it-all. I only wish to help her, but I must approach it in a way that makes her comfortable. I got to know of this drug because my cousin actually said that her doctor had told her of a "wonder" drug in the US. I said that I hadn't heard of it but would ask around if she told me the name of it.

Thanks to you all.

goldenwings
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Last edited by goldenwings; 08-22-2005 at 08:51 AM.

 
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Old 08-22-2005, 09:01 AM   #2
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Re: New Drug for fibro????

Sorry golden I have not heard of it, but will be interested in what others have to say.

 
Old 08-22-2005, 09:06 AM   #3
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Re: New Drug for fibro????

Hiya Glojer,

How are you doing? The other name - I thought it was the manufacturers name - is Lyrica. Any better?

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Old 08-22-2005, 09:12 AM   #4
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Re: New Drug for fibro????

hi golden,
i just did a search on the drug. it binds to the calcium in our bodies and regulates it. it is the sister drug to neurontin only is touted to work much better. i will be asking my doctor about it. it sounds like it is worth a try. do a search on your computer for it. you did spell it right.
your poor cousin. i think we all understand the fear and denial that goes with a new illness. we are here for you and for your cousin. in time she will find her way. you will find the right words to gift over to her. i cannot imagine you sounding like a know it all type. i simply do not see that as your style, girlfriend.
i sure hope we hear from someone here who has tried it. i will go back and read about side affects and such. my doc will know if it is one i ought to have in my body.
love and peace,
bluelakelady

 
Old 08-22-2005, 10:31 AM   #5
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Cool Re: New Drug for fibro????

Hi goldenwings,
If there is a wonder drug here in the states I sure have not heard about it. So check on the spelling and keep us posted.
Best of luck with your cousin, Keep the faith.
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Old 08-22-2005, 10:38 AM   #6
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Re: New Drug for fibro????

Hiya movin,

Yep, definitely got the spelling right. When I said this to my cousin, about her being sure about the drug, she said she would double check for me. This is why I thought I would check here. She saw her doctor on Saturday, and specifically asked for the name to be written down so she could let me know about it.

There is quite a lot of info on the internet on it, just hoped I might find someone who had taken it.

goldenwings
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Old 08-22-2005, 01:53 PM   #7
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Re: New Drug for fibro????

Ok lyrica I seem to have heard of, but do not take it. Neurontin, is that what is used for rls or am I confused? Which wouldn't be the first time!!

PS. never mind I looked it up, should have done that in the first place, sorry!

Last edited by Glojer; 08-22-2005 at 02:19 PM.

 
Old 08-22-2005, 03:06 PM   #8
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Re: New Drug for fibro????

Hiya Glojer,

You might be corect about the Neurotonin, I don't know the names of the drugs in the US. Funnily enough Idon't take anything for my rls.

My cousin's doctor said this drug he talked about was widely used in the US for the treatment of fibro. Mmmmmm. Pulling wool and eyes come to mind.

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Old 08-22-2005, 08:32 PM   #9
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Question Re: New Drug for fibro????

Hey goldenwings,
Thanks, I found the information that is on the web. I don't know but, from what I read, it is the wonder drug for EVERYTHING. Sounds too good to be true. I tried Neurontin and my stomach could not handle it. I got up to 3 pills 4 times a day and I had to stop it. Like everyone else I will check it out with my Doc. and see what she thinks. But after reading the information, I can't help but remember the old saying "If it seems too good to be true, it probably is." But still open minded about it. Even if it would help ONE person with fibro. I would say God Bless !
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Old 08-23-2005, 07:26 AM   #10
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Re: New Drug for fibro????

hi golden,
i am going to see my wonderful doc laura on thursday. i will ask her about this drug and get back to you with what she says. it does sound a little bit too good to be true. however, magic can happen.
how are you feeling today? and compassionman? give him a hug from his friend on the lake.
peace,
bluelakelady

 
Old 08-23-2005, 07:39 AM   #11
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Re: New Drug for fibro????

Hiya my friends,

Thanks for all of your input on this. Maybe my cousins doc is trying to fob her off with something. I can't say this to her though, because she is very touchy as I said. I will wait until the reports come back from you all.

Blue, I am not doing too badly thank you. I can sneeze now without screaming the place down. This time the costo is a long and painful episode. My ESR is through the roof again, so I am in a bit of a pickle. You know me, it annoys me because I am not on top of it yet. I am still in a lupus flare, and my fibro is having a little rumba on my body too he he !! I think it is just one of those times when my body conspires against me. Still, these things are sent to try us aren't they?

You know all of the things that I have wrong with me paled into comparison last night. I watched a tv programme about a boy who has Proteus Syndrome. I had not heard of it before, but what a marvellous example of getting on with it this boy was. He really brought tears to my eyes, not because I felt sorry for him but because I do so admire his fighting spirit and his get up and go. We have a lot to be thankful for each day I believe.

My compassionman has got no further with his tests, his bloods came back ok, just waiting for his brain scan now. I told him they were looking for one, just got to get back at him somehow he he !! He keeps telling me I'm getting old that is why I am having all of these sweats and so on. He takes it all in the fun way it is intended though. He is doing ok though, sent me some beautiful flowers yesterday for our wedding anniversary, makes me feel so special.

Anyway, I'm rambling again, so I will speak to you all very soon. Thanks for your help on this.

goldenwings
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Last edited by goldenwings; 08-23-2005 at 07:43 AM.

 
Old 08-23-2005, 08:41 AM   #12
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Re: New Drug for fibro????

happy anniversary to you both!
sometimes our bodies waltz and other times our body is in a mosh pit. the little people of our world are the greatest teachers we have when it comes to grace with illness. children are so much wiser than we are. they are still connected to all the universe and know they are never alone.
on the rare occasions i feel sorry for my body i take me to the cancer site here at healthboards. i am uplifted by the courage i see there. i am reminded that life is easy for me.
searching for a brain, eh? i had that done. they found a brain but could not say if it actually worked, giggle! they did find some tiny dead spots. must have been all that fun in the late 60's and early 70's, tee hee. i told the tech if they did not find a brain in my skull to check my little toes. that got a laugh!
sneeze away, hooray! lupus flare ups are testy little buggers, yes? i am sending you a sunrise with deer dancing on fresh meadow grass. the sound of doves gently calling in the air. i send you love, healing strong woman love to ease you thru this flare.
love,
bluelakelady

 
Old 08-29-2005, 09:37 AM   #13
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Re: New Drug for fibro????

Just an FYI, My rheumy is participating is in making and testing a new fms med that is not for depression and is not being tested on fms patients that have depression or a hx of it. He said about a year or so till it is released. I don't know the name of it. He is in St. Louis. Dr. Andrew Baldasarre.

 
Old 08-30-2005, 09:03 AM   #14
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Re: New Drug for fibro????

The new drug Lyrica is a replacement for Neurontin as now the time limit has expired.

" First marketed in 1983, gabapentin (Neurontin) has been one of Pfizer's top performing drugs. Lyrica (pregabalin) is seen as an important successor now that gabapentin is facing the threat of generic competition."

"Once generic manufacture of gabapentin is approved, sales of Pfizer's Neurontin are likely to fall dramatically. Encouraging physicians to switch patients from Neurontin to Lyrica (pregabalin), if approved, will be an important strategy in minimising the impact of generic competition. Lyrica (pregabalin) is as effective as Neurontin, but at lower doses, which translates to fewer side effects. Thus, it is well placed to capture Neurontin's market share."

quoted from:
http://www.drugdevelopment-technology.com/projects/pregabalin/

 
Old 08-30-2005, 12:12 PM   #15
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Re: New Drug for fibro????

Hello There,

I too have this information, but my cousin's doctor has told her that this drug is already being widely used in the US. Thing is she herself cannot get it until it is approved for use in the UK.

This is what I am trying to find out about. At this moment in time, I haven't found anyone in the US who comes to this board who has used it or is using it.

Thanks for the info anyway.

goldenwings
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