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Treatment for Fibro


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#1 Sweet

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Posted 22 August 2008 - 03:13 PM

Hi Everyone,

I see my primary care provider Monday. I was going to ask him about Lyrica. It's supposed to help those suffering with Fibro (me). Are any of you on it? Has it helped? Side effects? Cost?

Thanks everyone!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#2 barefut

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Posted 22 August 2008 - 04:45 PM

Hi Sweet,

My friend's husband is on it for fibro. I will ask him about it for you.

#3 truman

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Posted 22 August 2008 - 06:02 PM

Hi Sweet:

Never really had any side effects from it other than a sudden onset of dizziness upon getting up to fast. That faded in time. Cost was small due to co-pay.

You have to understand that for Lyrica to work, it has to be taken consistently, not just when you have pain.

Hope that helps.
Tru

It is what it is...........

#4 georgette

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Posted 23 August 2008 - 12:26 AM

I took lyrica , and I have to tell ya that I had very nasty side effects ...broke out in hives and the skin around my neck and face just burned , it felt like I had severe sunburn the skin so dehydrated that it felt like dried leather ,I now know how I am gunna look when I am 80 years old , also my tongue stared to go numb ,I had to spend the night in hospital in case the tongue swelled up ....... I was so desperately unwell ,it took 2 months for the skin on my face and neck to go back to normal ,it was aweful , BUT for others it has no side effects at all and helps with pain , so I guess its different for everyone ....good luck hugs georgette

#5 Piper

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Posted 23 August 2008 - 04:55 AM

Hi Sweet, I asked my Dr. about it as I have fibro and was told that it is being used for everything and anything lately and hasn't been approved for fibro, so ....no lyrica for me. Guess I have to stick to the elavil, which does help some but also causes weight gain. :(
Hugs, Piper

#6 Snowbird

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Posted 23 August 2008 - 01:55 PM

My sister is on it for her severe IC. It helps her a lot but she does get side effects as listed on it.....brain fog, vision, and dizziness....she's hoping they will pass in time because it does help with her 24/7 major pain.
Sending good wishes your way!

#7 Sam

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Posted 24 August 2008 - 01:46 AM

Sweet, I have been taking this since May. At first you get a feeling like your drunk when you first get up. So I suggest of taking this at night for awhile I did this for atleast two weeks then the third week I took the second pill in the morning and one at night. For while because of getting use to the effects of the medicine. It helps me with my muscle pain and it also helps me sleep at night. I now take two in the morning 1 in the afternoon and 2 at night. My rheumatologist just upped it last week so that is where the 1 in the afternoon came form. So I am now up to 375 mg a day. I hope this helps. I had to have the doctor write a letter so I could get it approved for insurance company. Sam
Sam

#8 Sweet

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Posted 24 August 2008 - 12:17 PM

Thanks everyone, I really appreciate it. I did more research on side effects etc and I'm not sure I want to be on this drug. I'll talk with my doctor about it tomorrow and get his view, but at this point, I think I'll hold off.

Thanks again you guys are wonderful!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Sweet

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Posted 26 August 2008 - 06:49 AM

Hi Everyone,

I talked with my doctor about Lryica and he agreed it might be a good therapy to give a try. He gave me a free 1 week trial. He and the pharmacist went on and on about how sleepy it would make me and said I'd probably never have to take a sleeping pill or benadryl (which is what I usually take nightly) again. Well I took 50 mg. last night and never felt a thing. As a matter of fact I was awake off and on all night. (normal for me, even if I get desperate enough to take a sleeping pill). I did feel a bit groggy and dizzy this morning, but I feel like that often due to the lack of sleep. Anyway, I guess within a week I should see an improvement in my pain if it's going to work for me. I'm concerned of course about one of the side effects and that is weight gain, since I am 25 pounds overweight as it is. If it does work and I choose to stay on it, then it will cost me $217.46 a month!!! Sooooo it's going to have to work very very well for me to decide to stay on it.

I'll keep you posted at the end of my week trial. Thanks again for you input!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Peggy

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Posted 26 August 2008 - 07:25 AM

I never knew that Lryica caused sleepiness. I was never told that when it was prescribed and I guess I didn't catch it on the sheet of side effects that came with it when I picked it up. I haven't been taking it as it doesn't seem to help me and I figured it could be one med that I could take out of my pill box as I take so many the way it is.

Warm hugs,

Peggy

#11 barefut

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Posted 26 August 2008 - 04:29 PM

Hey Sweet,

My friend also said Lyrica causes him sleepiness. Be careful driving!

#12 YFChoice

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Posted 28 August 2008 - 03:23 AM

Hi Sweet.....I have SD (26 years) and lupus. My doctor put me on 225mgs of Lyrica for pain and I love it. I take it about 9:30pm (I don't go to sleep til midnight). I sleep much better now, and, even if I get up in the nite (to take the dog out) I'm able to drift back to sleep. Before, if I woke up, the odds were pretty good I wouldn't get back to sleep. Plus the pain has for the most part been kept at bay. I have had no side effects at all. When I was first put on it, I took it in the morn and was a zombie all day. So I switched to at nite where being a zombie is not such a bad thing.
~ You have to think anyway.....you might as well think big

#13 Sweet

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Posted 28 August 2008 - 12:38 PM

Hi YF, thanks for your input.

I have taken it 3 nights in a row and frankly it seems to make me NOT sleep. When I do sleep it's quite fitful and I'm having strange dreams. I do think though I'm seeing a decrease in pain. Although, I did just get a chiropractic adjustment and also a massage. I may ask for another weeks worth to see if it's the meds or the treatments. I'm only on 50mg a night. More later.....
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#14 smac0719

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Posted 28 August 2008 - 01:01 PM

Sweet,

I hope it does work for you and am glad your Dr gave you some to try before spending that amount of money. I was blessed to have a Dr who gave it to me every month. All I had to do was pick it up. I did not gain weight on it and am surprised I missed that as a side effect. Hopefully you won't either.
I may have Scleroderma, but Scleroderma doesn't have me!

#15 MicheleM

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Posted 28 August 2008 - 01:06 PM

Sweet -

I took this drug and after a few days everything felt like marshmallow ... don't know how else to describe it. The pain was gone but so was I!!! It took about a week to get out of my system and then I felt like me again! Maybe painful, but my brain worked as good as it ever did ... if it ever did :) Anyway, I didn't find sleepiness a side effect but the dizziness, well I am a blonde (or was!) was present! I hope it works for you and you get more relief by the time you read this!
Soft hugs your way,

Michele

#16 Sam

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Posted 28 August 2008 - 01:37 PM

Pam you will have some strange dreams but the do subside, also it will help you sleep when I go to bed it knocks me out until I wake up some nights I dont sleep well those are the nights Im usually in alot of pain or just uncomfortable. I think you need more then a weeks worth to see how it will be. It can give you more energy in about 3 weeks. Oh the message and alignment sounds woenderful I so need to do that. Good luck.. Sam
Sam

#17 Sweet

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Posted 10 September 2008 - 05:52 AM

Hi Everyone,

I wanted to give you a report on the Lyrica. I'm only taking 50mg at night. After the 3 day, I thought I could really see a reduction in my daily pain. I was so excited. I was able to do a few more things during the day and was elated. Then after about 5 days, I started hurting more, but kept taking it a couple more days. Then decided I would go off of it to see if more severe pain came. It did. So I went back on it and within 2 days could tell a difference. Sooooo I think I'm going to stay on it. Most people dosage is 50-75 mg three times a day and, so I'm on a low dose. One of the big side effects is weight gain and I'm telling ya, it's all I can do to not eat the entire frig. I don't mean just the contents, I mean the entire frig! It's taken great discipline, and I'm trying to increase my activity level. I don't get any of the dizziness, or sleepiness that I was told I would get. I do think it's also helping me sleep better at night.

So that's the scoop!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#18 Snowbird

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Posted 10 September 2008 - 01:02 PM

Hey Sweet

I'm happy for you....and it's great that you're not having any of those side effects. :) :)
Sending good wishes your way!