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    Old 10-27-2005, 10:04 PM   #1
    cblasingame
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    Something to beware of with Lyrica

    Hi guys,

    I havent posted in a few days, thats because after a month of the Lyrica (that was such a miracle for me) I began to have HORRIBLE side affects. I got up..or I shall say attempted to get up one morning and couldnt move...litterally so stiff...my joints...every single one of them we so stiff it felt as though i were 140 yrs old. Maybe as if I had developed stage 10 arthritis over night. Well, I wasnt sure what it was...so me being me,...I let it go for a couple days...it got worse and worse..finally I called my PMD..she looked it up...and to our surprise...its a side affect of Lyrica...rare..nonetheless a side affect. Its called something like arthromo *** something...i cant remember what she called it...but anyway..she said she would have to cut the lyrica back to see if that helped...I lowered my dose for 2 days...and waaa laaaa...felt better...still stiff and sore...but nothing like I was...so as I finish the lowing to come off Lyrica I will feel like myself again.
    How disappointing is this? Such a wonderful drug with such positive results with the one type of pain that us RSDers suffer with and a side affect so horrible there is no way you can overlook it or live with it. At 41 when you cant climb 4 stairs (and your RSD is in your arm) thats bad!!
    I just wanted to share my experience with you all...I know almost everyone has started on Lyrica...I think I was the first to start...the side affect took almost a month to show up...if any of you start to feel stiff at all..please immediatley contact your doc...its not something you want to wait like I did and not be able to get around. There really isnt any info out on this drug so we can read much on it...just sharing my personal experience.
    I pray for another drug to be made to help with this ( I think Ive tried them all) and for those of you who can take it...your so lucky...just be careful and beware of the side affect i mentioned...Claire

     
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    Old 10-27-2005, 10:31 PM   #2
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    Re: Something to beware of with Lyrica

    Oh Claire how horrible for you!
    I remember posting a thread and asking about this versus the NeROTTON, and you replied saying it was better and made by the same company as Neurontin. Pfizer Company--who got slapped with the 2nd biggest fine by the FDA last year for promoting Neurontin for off label uses, and yes RSD was one of them. The drug was only meant to be for people with epilepsy and shingles if it was taken in co-junction with another seizure med. Gosh I'm so glad I tuned into tonight, cause I have an appt. with my dr. tommorrow for it. I had such high hopes. I'm so sorry that you had to be the first. I hope it's long term hangover isn't as long as it was NeROTTEN! Dang >>it just confirms another defeat for us RSD'rs that there is no magic pill to make it go away. Thanks for alerting us right away so others who were thinking about trying it may think twice. Was the side effect something to do with arthritis? How many mg. where you on a day? And you said after 2 days you could feel some relief?
    I remember asking my daughter's dr. and he said that he was prescribing it to people with diabetic pain, and epilepsy. I pray that you get it out of your system. One month isn't that long. Better than a year or 2 of Neurontin! Thanks for managing the strength to alert us all. Take Care--Aloha Skooze

     
    Old 10-28-2005, 07:34 AM   #3
    cblasingame
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    Re: Something to beware of with Lyrica

    Hi Skooze,
    The funny thing is I dont have arthritis, never did...I was started on 75 mg twice a day and after a week increased to 150 mg twice a day, I tolerated that for almost 3 weeks before the side affects I previously described showed up. And you are right, unfortunately there is no magic pill out there for us RSDers, however, this seemed to be the most promising yet. It is also a epileptic..anti seziere as well, but as my Dr described it works directly in the spinal colemn and thats what sets it apart from neurontin.
    The really strange thing is is that there isnt even a history of arthritis in my family, and my Dr said it has nothing to do with it...even if I currently had arthritis....its just a side affect of the Lyrica unfortunately ...I hope if anyone else that has started or is thinking about starting this drug...they really are aware of this. I have a very high tolerance for pain and am on 90 mg of oxycontin a day with percocet for breakthrough pain...and even with all those narcotics in my system..i still couldnt get my legs to move without literally bringing tears to my eyes. Its certainly nothing to play around with, nor is it something that will go away in time like the "ditzy" feeling did...believe me...I waited it out to see, and suffered immensely because of it. I hope this saves someone from additional unneeded pain. Claire

     
    Old 10-28-2005, 05:38 PM   #4
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    Re: Something to beware of with Lyrica

    Hi - my doctor is going to get me a sample of Lycria to see how I react. Could you please tell me how much you were on. I seem to be very drug tolarant but will start as a very low dosage and see if that does some good. Only on 900 neurontin with 3 mg of Clonmazepam. He would like to see if he can get me off both of those. Laura.
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    Old 10-28-2005, 11:15 PM   #5
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    Re: Something to beware of with Lyrica

    Hi Claire--I'm happy to see you made it through another day. I'm just wondering about the arthritis part? Does this men now that you have arthritis in your legs now in additon to the RSD? And on the side effect sheet it listede arthritis as a adverse reaction? And you're doctor told you it worked in the spinal column as opposed to Neurontin. I guess I don't know much about arthritis, except for the ads of old people having it and taking asprin. I mean in away RSD is similar to RSD, because our movements are jerky and painful, and we tend to hold the affected limb in a fixed position. I didnt even know arthriits is inherited! I know RSD can be inherited. I worry about my kids maybe could get it, because both are hypoglycemic like me.
    It blows my mind and makes me wonder about these new meds and how long they try them out. It's bad enough having RSD but to have arthritis on top of it in your legs too? Mine is in my upper left extremity, and every day it feels like I'm 80 years old, especially on waking. I'm on 160 mg. of MSCotin with percocets for break through. I'm glad that you did warn others about it. Although every body tollerates meds differently. Some people do well on the neurontin. Very few but some. I'm just glad you found out in time, and I pray that you don't have any ill long-term side effects from this. You are in my prayers. Aloha Skooze

     
    Old 10-29-2005, 10:07 AM   #6
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    Re: Something to beware of with Lyrica

    HI skooze, When I recieved the Lyrica from the pharmacy, it was so new..the pharmacy had no printed information on it at all that came with it. It is now Saturday and I am off the med..I would thnk it is out of my system by now,\, but my joints are stilll VERY painful. I hope to god I dont have arthritis on top of RSD...my RSD is in my upper left extemity as well. Its bad enough dealing with this spreading up and down my arm....now I have trouble walking as well? It almost seems bizarre that this med would cause a permenant condition but Im supposed to call my Dr on monday to let her know how things are going. I will post more after I talk to her...Claire

     
    Old 10-29-2005, 09:31 PM   #7
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    Re: Something to beware of with Lyrica

    Aloha Claire! Sorry to see you in so much pain My RSD at one point spread to my lower left leg where I cringed when I had to walk. And the cold weather made it even worse. I started walking on the right foot to compensate, and then that leg went numb. They both do, still occasionally, especially when I have to go to the bathroom in the middle of the night. My daughter has found me many a times not able to move. Now I have my cane beside my bed, so I don't have to wake her. It will be interesting to see what your doctor has to say on Monday. Have you tried going to the Pfizer website to see what the side effects are? I was so gung ho on this idea, that I haven't even checked this out. You saved me from getting that script!
    I hope it makes others to realize that it's not cracked up to what it is supposed to be. Has anything else changed since you started taking this? Increased sweating or lack of sleep, depression, radical temperature changes or more swelling especially in the lower extremity? Are you taking any herbal supplements? I tell my doctor of any supplements that I take, to get a perspective if they are a waste or not. I recently started Graviola and I seam to be more perky and move more easily. The downsize is I tend to overdue it, and come home exhaused. Or maybe it was the gas price that went up to $4 a gallon here, and I combined all my trips into one day. It takes me 2 days to recoup after that!
    Anyhow I would think that a drug would stay in your system for at least a week more, even though you've been only on it one month! Drink lots of water to try and flush it out. You are in my prayers deat, and hang in there. Aloha Skooze

     
    Old 10-29-2005, 10:14 PM   #8
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    Re: Something to beware of with Lyrica

    H Claire--I just did some research on this. It says that you should not take this drug if you are taking any narcotics (such as oxycodone) tranquilizers, or mediicine for anxiety. You may have a higher chance for dizziness & sleepiness. Well I just flunked 2 out of 3 on the med test.
    If you take too much--go to the nearest ER room I have never seen this on any drug precaution sheet! Crazy. Side effects are blurred vision, weight gain, (edema) unexplained muscle problems, such as pain, soreness or weakness. Hello sounds like what you think is arthritis or still could be.Can make you feel HIGH especially if you have abused pain meds or alcohol in the past, Thye really don't advertise it for other nerve pain, They are being very cautious, probably due to the last fine of $43K by the FDA.
    Hope this helps answer other's questions or concerns. I mean how many of RSD'ers take some form of oxycodone for pain? Duh! And to think that we've abused it in the past I guess it is trying to define what abuse it to cover their you-know- what. Let's see-- I"ve had RSD for 7 years and have been on some form of oxycodone for that time. And to anormal person--is this considered abuse? The part that really got me was if you take too much (Lyrica) go to the nearest ER room. I must admit that I have never seen that precaution on any drug that I've ever taken. I can just see the skull bone pink warning label on the bottle, along with all the other warnings! Too much!
    Hope this helps all out there. Any more stories that need to be told, I'm all ears.
    Aloha Skooze

     
    Old 10-30-2005, 05:15 PM   #9
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    Re: Something to beware of with Lyrica

    Skooze,
    Where did you read this information? It appears that many of us, if not all use some form of oxycodone. This kind of makes sense now, I have stopped taking the Lyrica and no more little green men (halucinations,lol) and no more pounding heart, etc... What will they come up with next for us to be guinnea pigs for??? I will probably try it ya never know what will work... Anyway hope your day is as pain free as possible..Aloha...Bernie

     
    Old 10-30-2005, 07:04 PM   #10
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    Re: Something to beware of with Lyrica

    Bernie...The info is on the website for the maker of the drug...pfizer..or it is also on the Lyrica's own site...Im surprised this late in the game..since its been out a little over a month that it didnt come with that info printed from the pharmacy, since the info is readily available on the site. When I first started on Lyrica there wasnt even a site yet nor was there any info printed from the pharmacy..just a blank page where all info usually is. Check out the site as it also does list a rapid heart rate as a possible side affect as well....Claire

     
    Old 10-31-2005, 09:37 AM   #11
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    Exclamation Re: Something to beware of with Lyrica


    You have got to be kidding me here!
    Just when you think that there might be something better than that stupid Neurontin...yikes!
    No wonder my team of Dr.'s was not anxious to give it to me.
    I guess I'm better off that a lot of RSD'ers...I'm totally off of the Oxycotin and the only thing I use now is the Neurontin...of course for the break through pain I have the Vicodin.
    Wow...When I start mine (the L. drug!) I will only be on 2 N.'s a day..one in the am. one in the late afternoon and the L. at bedtime..then they will see how I do..Now, of course I am a bit apprehensive of it all...Just happy to be out of my wheel-chair and where I go from this will be only better than were I was.
    I just love this board and how much care and love there seems to be given to all of us.
    Thank you so much for all your help and for the sharing of your own trials with RSD..
    Have a blessed week.
    Hubbard
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    Old 10-31-2005, 08:30 PM   #12
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    Re: Something to beware of with Lyrica

    Well I talked to my Dr this morning about the still increased joint pain....she said she thinks it will still take another week or so to get it out of my system Not to be the bearer of bad news or anything but.....as it said on the website...and i think skooze mentioned it too...swelling of the limbs...well.........my hands and feet are soooooooooo swollen today its pathetic. My Dr wants me to come in on Wednesday to see if we can figure out another plan . And just to let you know...swelling of the limbs is also another lovely side affect of Lyrica. I have marks where my socks have been and my non RSD arm is swollen...BUT my RSD arm is SWOLLEN...so swollen in fact i cant close my hand all the way (that may be a little swollen dont ya think? LOL) Im not sure it was worth all this ugliness Well the other awesome news...I also had an issue with my Rt ulnar nerve too....but my left arm got worse first so thats the one I had surgery on..(and got the RSD from) and you guessed it!! my right arm is flareddddddddd up too now. My Dr thinks that the lyrica started it and since my RSD arm has been so painful...its been my sole use almost...so now I dunno whats gonna happen with what used to be my good arm . All this because a new drug all the Docs were so excited about. If you read all the literature tho...it does sound very promising.
    I also asked her how come I can be in so much pain with my joints with all the pain meds I take and she said its because its a side affect...and side affect pain like that isnt the same...so its not treatable with narcotics...makes sense tho..how else would you know you had that kind of side affect if it was masked by the narcotics we take?....Hoping others do better than I did with the wonder drug....Claire

     
    Old 11-01-2005, 06:09 PM   #13
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    Re: Something to beware of with Lyrica

    cblas,
    Are you taking medications for diabetes?

     
    Old 11-01-2005, 08:46 PM   #14
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    Re: Something to beware of with Lyrica

    No Im not taking any meds for diabetes, thank god I dont have that too. Hang in there...things keep popping up by the week, so you never know...check in with me next week and Ill let ya know hahaha...Claire

     
    Old 11-02-2005, 10:08 PM   #15
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    Re: Something to beware of with Lyrica

    Hey skooze...Just an update on the feeble bones..lol. I went back to my PMD today for a follow up to figure out a new plan, it turns out in the meantime she had consulted with some other Dr's who also have been prescribing Lyrica and they all seem to be agreeing that maybe the dosing was increased more than my body could handle (although i wasnt started on nor increased more than any other patient). They all seem to think that because it had such positive benefits for me in the beginning, that maybe we should give it another try! Well...out of desperation, Im willing to try anything to be quite honest. So here is the plan, in 2 weeks, when all the Lyrica is out of my system I will start on 25 mgs twice a day for 2 weeks and then every 2 weeks she will increase it by 25 mgs to make sure my body has time to adjust to the medication. If the feebleness even starts to come back...we will stop immediately and try something else. I normally wouldnt try something again once i had such a horrid thing happen, but it was such a help for the burning and as you know...there isnt much else out there that is...so again, desperation takes over. She also increased my pain med which was desperately needed as well. I will let ya know how things progress this way..I sure hope it doesnt do that again!! The head Dr that ran the seminar my Dr attended said although it is a listed side affect....out of all the people that have been put on Lyrica since it came out (she said there has been tonssss) that noone has reported this side affect. Leave it to me...hahahaha. But then again..maybe they are right and it was a dosing issue and I will be ok this time around..I sure hope so. Wish me luck this trip....Claire

     
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