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 :angel:

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

Hiya Glojer,

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

goldenwings :angel:

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

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.

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 :angel:

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!

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.

goldenwings :angel:

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 ! ;)

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

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 :angel:

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

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.

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/

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 :angel:

hi golden,
i asked my doctor to check it out for me. she will let me know next month what she thinks of it and if it is a viable replacement for my neurontin. she had not heard of it. she does alot of reading about fibromyalgia and myofacial and rls and rheumatoid arthritis and lupus. shucks, she does alot of reading!
anyway it will be a bit till i get her opinion and information.
peace,
bluelakelady
i don't think your cousins doc is placating her. i think her doc really is trying to come up with the best and newest pill solution available. is this drug the one? who the heck knows. if my doc says okay i will be the lab rat and test it. mmmmm i love cheese. giggle. took my sleepy time pills. they make me goofy.

Hiya Blue,

Thanks for looking into it for me. It's very interesting though that it is supposedly "widely" used already in the US. This is why I said perhaps the doctor is trying to fob her off.

My cousin, bless her, has had a tendency to be a bit ultra aware of medical problems she has, and in a lot of cases imagines she has. What I mean, and I am not in any way being rude because she can't help it, is that she has imagined a lot of things going wrong with her. She actually "gets" the same symptoms as others when they are told to her. When something is said to her she actually get the same thing only 10 times worse. I personally feel that she needs to see someone who will be able to counsel her on this, but all attempts by her family have been fruitless.

I love her to bits, she is a superb person and would do anything for anyone if she could. That is why I feel a bit awful saying this, but it is the way she is. I support her any way I can by talking to her on the telephone as we live a long way from each other, and trying to reassure her, but sometimes I think it is best she goes to the doctor and then they can deal with her fears and so on about her health.

Thanks again Blue, and you take it easy now. Hope you are settling in and enjoying your wonderful new surroundings.

Luv

goldenwings :angel:

hi goldie,
it's cool. i understand. i too have had experience with empathatic symptoms. sounds like your cousin is choosing to travel this hard road alone. sad. so sad.
your uk doc must know more than we do about how we dispense our drugs over here, tee hee!
i am so in love with my new little slice of earth. each morning i rise before the sun and watch orion sail into the predawn sky. autumn is in the air. today is supposed to hit 100 so i thought i would get some exercise and go over to blue lake for a bit of kayaking. i hear the call of a red tail hawk right now. i even got to see a bald eagle on my way home from the pharmacy the other day.
the peaches and nectarines are almost ripe. fruit is good for me. now i can go out in the yard and pick a bit of healthy right off the tree. the yard keeps me walking and the terrain slopes a bit steep in a few places. good for those not so strong calf muscles. it's nice to take a walk and never leave my yard. until we develope the land i have only a bit of watering to do. much as i loved my old yard the break is heaven. now it takes me 10 minutes to water. the old place was at least 2 hours of hand watering. this time we will put in a drip system first, then the plants. one learns the only way one can. the hard way, giggle!
the peace of mind is the best part of being here. so quiet within. so quiet without. so delightfully, sweetly quiet. like nectar to a weary soul. and this soul is drinking her fill.
i hit the bricks again tomorrow with physical therapy. i must get ready to be on the road again for 2 weeks come october. i will be gone to fresno to help my other daughter and her new baby. it's her first. no computer there so i will be out of reach for a bit.
be well my friend. hugs to compassionman for me.
luv,
bluelakelady

Hiya Blue,

My cousin has my time and unending support as you know, and I try to help her in every way I can. I am learning to not mention anything that is going wrong with me, in this way she hasn't got any symptoms to think about. If and when she then speaks of something, I make sure she is in fact going through it herself and not imagining it. This is why at the moment I am keeping her in touch with everything I know and am learning about fibro, which she definitely has been diagnosed with.

I am going to reply later to the rest of your post. I need time to open up my mind and be there with you and sit and watch you doing the back yard work he he !! I'll have a pitcher of lemonade waiting for you when you have finished.

goldenwings :angel:

hi goldenwings
yes i am on that it is called progabalin ( lyrica )and i am on 75mg 3 times a day i have been on it now for about 4months and it is good,though like other tablets after a while your body gets used to it and you need that little bit extra to keep the pain at bay it doesnt stop the pain it eases it and it takes at least 2-3 months to get in your system as it is stil on clynical trial my doctor cant give me any higher dosage.

Hiya Kathy,

I have just posted a reply to another of your posts. Thanks for the information. I can let my cousin know that there is a person I know on it at the moment. Would you mind if I quote your comments on it to her?

Thanks, take care.

goldenwings :angel:

thank you for helping golden kathy!
well, i got to the lake and decided kayaking was asking a bit much of my body today. so i sat by the lake with a friend and worked my mouth muscles instead.
i love lemonade! we will sit in the shade of my redwood tree together.
peace,
bluelakelady

Hello Blue,

Good info coming in from Kathy. I will pass it to my dear cousin and hope she can gain some hope that she might get it one day.

Well my friend, I had a hot sunny day today - I wasn't out in it though - here on my little island. The tonight wham, thunder and lightening. The roar of the thunder was tremendous, the lightening making patterns in the sky. Thought it might clear the air, but not at the moment.

Red tail hawks, bald eagles, wow Blue how stupendous is that. I can see them when I close my eyes. I am getting onto a more fruit in my diet kick, and I can taste the fruits off your trees. Peace is what you needed and deserved and this is what you have. When I named IT for you, it was because at that time he was in the picture full force and nasty. He is no longer even worth the breath from your body to speak the name, so I ban all mention of the name. That is the past, you are the future. The land you inhabit will become as one with you and you will both grow and flourish together now that you have settled and you have taken root. Your wonderful brother is such a good companion and you are both so blessed to have found such a place to be.

Good luck with your PT. Just a thought, whenever going to PT is mentioned to me I think of something that I read:-

""I feel like my body has gotten totally out of shape, so I got my doctor's permission to join a fitness club and start exercising. I decided to take an aerobics class for seniors. I bent, twisted, gyrated, jumped up and down, and perspired for an hour. But, by the time I got my leotards on, the class was over"". Don't you just love it he he !!

My love and best wishes to you and your brother and ((((((hugs and kisses)))))) to your daughter and the new little Blue that has come into the world. With you as grandma, the child will be a wonderful human being.

My compassionman asks about you a lot, and I love to report on your latest sighting of whatever animal, bird, new tree, colour of sky in the morning or at night that you tell me of. He send his warmest wishes to you.

Take care and thanks for letting me part of your wonderful world.

godlenwings :angel:

Golden I loved the verse about the aerobics classed, gave me such a laugh. Thank you so much. I take an aerobics class and most of us are 50's and 60's and thank goodness we don't wear leotards!!! I don't think there would be enough spandex in the world to hold up the sagging going on in that group...ha...ha!!

Seriously, those ladies put me to shame when it comes to energy and agility. Some are absolutly amazing and everyone of them are the nicest ladies I know. It's great when you get my age, people in this age bracket just aren't as quick to judge.

Thanks Golden!

Glojer

Dear Glojer,

My pleasure. I have some more of those type of pick me up verses, I sit here and laugh away to myself. The best medicine I think he he !!

goldenwings :angel: