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  • What Meds are you all taking?

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    Old 04-10-2007, 03:03 AM   #1
    LdyNY
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    What Meds are you all taking?

    I'm very curious to see what meds you are all taking to help with your RSD?

    As said in a post before, I take 90 Tylenol 4's a month... Not only is 90 enough for me, but if I get 120 I think my liver will be very angry at me

    What seems to work for you? What kind of painkillers do they have WITHOUT acetaminophen in it? I go to my Orthopedist today, so I will also talk to him about it then... he has knowledge about RSD. I just want something that helps with the pain (Like my Tylenol 4's) but that won't destroy my liver over time!

     
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    Old 04-10-2007, 03:38 PM   #2
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    Re: What Meds are you all taking?

    we all take a variaty of drugs. My routine is this. 7:00 am I take 300 mg neurontin, 40 mg morphine, 10 mg protonix, at 11:30 I take 300 mg neurontin and 15 mg MSIR (morphine instant release), 4:30 I take 300 neurontin and sometime MSIR, 7:00 300 meurontin, 40 mgs morphine, bedtime 900 mgs neurontin, 40 mgs zanophlex, 8 mgs backlophen, 15 mgs morphine, 3 mgs Lunesta. and I wear a Catapress patch all the time. I change up the meds frequently sometimes I take more Zanoflex sometimes less etc. I hope this helps. God bless... Bernie <><I hope all is well Skooze, Sharon, Dee and all others out there. I did have SCS replaced. This one has heated up but that was just 3 days after surgery. Should be okay. I hope to get back to work soon. God bless all...Bernie

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    Old 04-10-2007, 04:06 PM   #3
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    Re: What Meds are you all taking?

    Hi

    I take 3600 mg of Neurontin a day, Norco 10/325 4 x a day. I take Soma 350 mg a day for severe muscle spasms cause by a condition called Cervical Dystonia. The muscle spasms can be so severe they cause my left shoulder to draw up to my ear. I take 400 mg. Celebrex for arthritis in my knees, hands, ankles and hips. I hope this helps.

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    Old 04-10-2007, 04:42 PM   #4
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    Smile Re: What Meds are you all taking?

    Hi Emilie,

    This is a little late so I hope you got some help from your doc today. It seems like you might need a pain med that is longer acting like MS Contin or Oxycontin. Those are continuous-release pain meds. When I was taking MS Contin, I took it three times per day. There is no tylenol in them either so that's an added benefit.

    Hi, Bernie .

    Sharon

     
    Old 04-10-2007, 06:00 PM   #5
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    Re: What Meds are you all taking?

    Thanks for the replies I've tried Neurontin in the past for a while but it didn't do anything for me... so I stopped taking it. There was also one other medication I took... I can't remember the name now It started with an L and I think it was fairly new?

    I was talking to my Dad in the card on the way to the doctor (Although I'm 21, he takes care of me in every way possible since I've been out of work.. I live in the house, he buys the food, pays for my meds, pays for doctors, pays for internet and everything else, etc) and I brought up asking my doctor for different meds, Percocet, Oxy, etc... but he told me no. He pays for it, and he doesn't want me to be 'addicted' to anything. I totally understand this, and he knows I'm in a lot of pain... but the Tylenol 4's DO work... it's just that they stop working quickly, and I end up taking more than 3 a day. He won't let me ask for 120 pills either, both for the cost and for my health. (The 90 Tylenol 4's cost over $50 a month). So far since I was injured (I got the printout at the pharmacy), we have spent $657 on medications. WOW, just WOW. So I understand that he wouldn't want me to get anything more expensive...

    Unfortunately this wouldn't be a problem if W/C was paying for my medications like they SHOULD be, and like they did for 6 months and then stopped.

    But, like I said... my trial starts in a month or two, and hopefully I will win and get authorized for PM finally, and they will pay for my meds and for my treatments. I will update you all on what's going on

     
    Old 04-11-2007, 12:42 AM   #6
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    Re: What Meds are you all taking?

    I would worry about the amount of Tylenol you are taking. Your dad may not want you addicted but my sister was taking this level of Tylenol for several years and when she went for tests before surgery they told her she her liver was failing. Lucky they did the tests. She was told she can never, every take actaminiphen again, not even a cold tablet containing it. The other drug you were thinking of is Lyrica. I take it. I take 200 mg Celebrex for arthritis, 75 Lyrica, Clonazepam (think .5 mg) in the morning; 75 mg Lyrica, Clonazepam and 100 Celebrex in the afternoon and Clonazepam, 300 Neurontin, 40 Elavil, 1000 mg Tylenol and 30 Restoril (sleeping aid) at bed time. My leg burns most at night for some reason which is why I take so much then. My RSD is no where near as bad as some of the people on these boards but before I got on the meds and back to the pool to exercise, it spread to my other leg and hands and face (emergency and morphine). Once I got on Clonazepam and Neurontin 1200, and to the pool, it backed off. With my present drug routine if I stay off the leg as much as possible, and exercise in the pool religiously the pain is very manageable, thank the Lord. Hope you can find another drug and the W/C does what is should do and pays you properly. Good luck Laura
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    Old 04-11-2007, 01:12 AM   #7
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    Re: What Meds are you all taking?

    All I know is taking all these meds is slowly doing us more harm then good. Right its helping but who know what its doing to are insides. Right know I take as the following:
    1200 mg of nuerotin 3xs a day
    150 mg of lyrica 1x a day
    30 mg of pamelor 1xs a day
    60mg of cymbalta 1xs a day
    350mg of soma 2xs a day
    25mg of fedeline 2xs a day
    10-325mg of perrocet every 4 hrs
    20mg of oxycotin every 12hrs
    12.5 ambien cr 1x daily

    Theres whole bunch that I take here and there depend on whats goingon with me. So your definetliy not alone just different drugs. I wish you the best of luck.

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    Old 04-12-2007, 06:14 AM   #8
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    Re: What Meds are you all taking?

    i really do think your dad needs to speak with your PM about your actual pain needs.he is not really being very realistic here with you.have you ever tried to get on disability?Or SSI?this is just one option which would also help to pay for your own meds so he really wouldn't have to deal with your Rx bills and you DO have the right to chose certain med options,just tell him that he is not the one suffering.in any given chronic pain patient,the actual rate of becomming "addicted" is only about 3% vs the rest of the population in which that percentage is much much higher.don't ever confuse actual addiction with just plain old dependancy.they are two totally different animals here.anyone that has to actually take just about any type of med daily will eventually become dependant upon it just to maintain whatever condition they are being treated for.addiction is more a behavioral type of thing which causes the person to do destructive things to themselves or another person to maintain a certain supply and maintain a 'high' like i sad,two totally different things here.

    I really do think the sooner you can get off of any tylenol based meds the better since you are going to be managing pain probably forever here,unless they finally come up with a better plan.there are many different non tylenol based meds that alot of people have already mentioned.but the more you can stay the heck away from any tylenol all the better for you in the long run.tylenol not only affects the liver but the kidneys as well.people have also gone into renal failure based on too much tylenol.it is actually called analgesic nephropathy.its not pretty either.

    i think actually getting on a long acting type med such as oxycontin or even MS contin would be a much better choice and would give you much more even coverage as opposed to the ups and downs you get from the short acting meds.the biggest drawback to using short acting meds only is you end up always trying to chase your pain.the constant delivery system in the long acting just prevents alot of short actings problems,thats all.if you do end up sticking with the short acting,go with something like oxy IR.this comes in generic form too and would probaly be comparable to what you are now paying for the ty 4s.vicodin is also a good choice but it only comes with tylenol for some stupid reason.

    at any rate,you really do need to speak with your doc about options.your dads wishes really shouldn't be playing a huge part in your pain management,really.you ARE the one who is suffering here not him.just what dosage was your neurontin at its highest point?alot of people give up on this med way too soon.it can take up to 2000mgs to 3600 a day to actually obtain real relief with it.alot of peoplegive up just way too soon and had they just tapered up on it a few times would have probably gotten at least some level of relief from it.there are also a huge list of other similar anti siezure meds that you can also try.they are not all created equal.each has a bit different properties than the others.just a suggestion for you.i do wish you luck with everything.if you havent yet checked into obtaining disability or even possibly SSI,it should at least be attempted.even with WC,i am not one hundred percent certain but i do believe you are entitled to both since the money comes from two totally seperate places.disability is just something you have payed into.but if you havent built up a huge work history,then that idea would be out the window from the get go.depending on how your WC case goes,SSI would be a possibility if you are disabled and unable to work.this is income based.just some suggestions for you.please keep us posted.Marcia
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    Old 04-12-2007, 12:38 PM   #9
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    Re: What Meds are you all taking?

    Thanks for all the info Marcia Right now I don't see a PM doctor because WC will not authorize it (They pretty much won't authorize anything aside from my monthly appointments with my doctors) so I get my medication from my Orthopedic Surgeon I've been seeing since last year.

    I'm not sure if he would prescribe me Oxycontin or not, is that the one with no Tylenol in it? I will ask next month, because I don't want to take so much Tylenol (I've been taking 90 Tylenol 4's a month since December 2005) and even though I get blood tests to check my kidneys and liver every few months, I still don't feel comfortable. I know my doctor believes I am in a lot of pain, and that I definitely have RSD, I just hope that he will prescribe me that.

    I couldn't get Social Security because I haven't worked long enough (I've had 5 jobs since I was 15, but two were off the books ), and I'm going to try and go to Social Services either tomorrow or next week to see if I can get Disability welfare or something... and also to sign up for Medicaid, because I should be able to get it, I think. But I think you need to be disabled for two years before you can get Medicaid, and it's only been 18 months so I may have to wait a bit longer.

    Hopefully I just have to go through one more month with the Tylenol and then will talk with my doctor about changing my medication. I hope though that whatever else I try will work with my pain. I had two of my wisdom teeth pulled out last month, and my oral surgeon gave me Vicodin for it. The Vicodin worked PERFECTLY for my mouth, I didn't feel pain almost at all when I took it, but my foot was killing me for those few weeks. And I didn't want to really alternate or take both too close to each other because that would be A LOT of Tylenol. I knew Vicodin didn't work for my foot anyway, because when I first was hurt in November 2005, the first thing I was prescribed was Vicodin and it didn't help. So far, the Tylenol 4's are the only thing that have helped. But maybe something a bit longer lasting, without the Tylenol will help like you said Thanks !

     
    Old 04-12-2007, 10:19 PM   #10
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    Re: What Meds are you all taking?

    Hey Yall,
    With the pain im in here are the meds im on.
    Lyric 75 mg 2 x day
    Indocin 1 x day........why this i do not know
    Percocet...just got these.

    That is it!!!!!

    I need something to take this burning, stinging pain away...that pain has
    spread....attacking my right foot, right leg, whole lower back, both hips,
    and now the left leg, both buttocks and now attacking my upper back.
    I think this smilely is putting out the fire

    I thank god for this message board!!!

    Yall have a good one,
    CAT

     
    Old 04-12-2007, 10:28 PM   #11
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    Re: What Meds are you all taking?

    T-3's are a joke. You need something for nerve pain. Narcotics are the worst thing. Ask about Lyrica It has done wonders for me, cymbalta , and clonadine. I have been at a low pain level for several months now. I would definatly also get an RSD educated doc too! Real important.
    Good luck to you and heres to Praying to be pain free! :0)
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    Old 04-13-2007, 10:07 AM   #12
    LdyNY
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    Re: What Meds are you all taking?

    Quote:
    Originally Posted by ahoksbe View Post
    T-3's are a joke. You need something for nerve pain. Narcotics are the worst thing. Ask about Lyrica It has done wonders for me, cymbalta , and clonadine. I have been at a low pain level for several months now. I would definatly also get an RSD educated doc too! Real important.
    Good luck to you and heres to Praying to be pain free! :0)
    I had T-3's in the beginning, and didn't help too much so I took T-4's instead and suprisingly, they help a lot. Not with the burning pains, but with the aching pains... or the pains I get when I try to put pressure on it.

    I tried Lyrica for a month or two, and I felt no difference.. but I'm thinking I might not have taken enough, or not long enough. I also tried Neurontin (The first time I was hurt, about 4 years ago, and it didn't do much for my pain.. I just lived with it for the next two years until I got hurt again in the same spot). It's so difficult because there are so many different pains. I had RSD to begin with in 2003 when I broke my foot in three places, but after a year it was okay. It hurt, but I worked on it and stuff... I went to PM though a few times, and got some Physical Therapy which helped.. but then when I got rehurt on the same foot (What are the odds?) The RSD just got SO much worse... The T-4's have done wonders for most of the aching pain in my foot.. but like I said, not the burning, numbness, tingling and all of that

    Two days ago after my doctor's appointment, I went to the supermarket with my Dad, we were on line for SO long.. if I knew it was so busy, I wouldn't have went in. My cane doesn't help support me that much.. so my foot was in some of the worst pain it's been in since the accident. When we finally got out, it fell asleep kinda (Or if I don't move it, I just lose control of it... As it is, I can't bring my foot up and down, side to side, or move my toes at all) and ended up twisting that ankle.

    Then coming in the house that day, I slipped because of the rain and twisted it again! The T-4 and heating pad made me not want to kill myself that day

    Once I go to PM I can start taking new medications for my nerve pain, but I do like to stick with the T-4's or some kind of other painkiller too, since I have a lot of tissue and bone pain too.

    Wow I rambled on too long Sorry, but I'm just so happy to find a group of people with the same problem as me! <3

     
    Old 04-14-2007, 01:21 AM   #13
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    Re: What Meds are you all taking?

    Hey Yall,
    Lyrica has NOT really done anything for me. The nerve pain is even worse!!!
    I dont even have the right kind of Doctor for myself....its so hard with W/C...been a nitemare for over 7 months.......at the 5th month mark i had to get a lawyer...i saw where it was going. I had my case worker with W/C telling me i had to go back to work and i said ok....find me the job where i can sit down and keep my foot evalvated!!!! Nothing further from her.
    Recently they have changed the state locations with my workers comp, and i hope this one is a tad better then the last one.
    My first time with W/C and i just cant believe how they treat you...i wonder how they sleep at nite.
    Like i said......i take Lyrica and it really doesnt do anything. The percocet help a tad, but NOT enough!!!! I cant wait to have a Doctor who not only knows about RSD but knows how to treat it.

    Have a great morning yall,
    CAT
    P.S. As you see from my time...i dont sleep...only a hour here and there...i know i am not the only one.
    Since learning i had RSD about 1 month ago, i have tried to research as much as i can.........Thanks so much for this message board...yall have really helped and i dont feel so alone anymore.
    THANKS!!!!!

     
    Old 04-19-2007, 01:47 AM   #14
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    Re: What Meds are you all taking?

    good early morning eveyone

    For my RSD pain I used to take:
    Lyrica 75mg 3xday,
    Ultram 50mg 4xday,
    Cymbalta 60mg 1xday,
    and Ambien cr 12.5mg at bedtime

    Then a few months ago I had to switch doc's (the doc I had moved to florida at the end of December) so I started seeing his assosiate I'm starting to think that was a mistake.
    the pills I was on weren't really helping all that well but they were atleast taking the edge off the pain and making it bearable.

    but when I switchted doc's he changed my pills:

    he had me on:
    Ultram 50 mg 4 x a day
    Cymbalta 60 mg 1 x a day
    and Ambien 12.5 mg at bedtime

    I asked him if he could give me something stronger just to help on the days
    when I can't handle the pain anymore and he said no and looked at me like i was addicted to them I had been given Vicaton and Skelexon on different occasions and I would only take then when the pain and burning in my leg got so intence that I couldn't handle it any more. I don't like how they make me feel drugged the next day so I only used them maybe 2 x a month sometimes more depending on the weather and what all I had to do that day.

    so now he has me on:
    Ultram ER 200mg 1x a day
    Cymbalta 60mg 1 x A day
    and Ambien 12.5 mg at bedtime.

    I am also on other meds for other conditions (I have diebetes and ashma)
    so along with the pills I take for the RSD I am on

    Glucotrol 10mg 2x a day
    Avandia 4mg 2x a day
    Glucophage 500mg 2pills 2x aday
    and Prinivil 10 mg 1x aday
    also I am on:
    Pulmacort 200 3 puffs 2x aday
    Alburteral 17g 2 puffs whenever needed

    and being on the 200mg dose of Ultram I get neusous sometimes and can't eat.

     
    Old 04-19-2007, 06:04 AM   #15
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    Re: What Meds are you all taking?

    Good Morning all.

    I am fairly new here yet I wanted to give my input of the meds I have been on over the last 2 1/2 years. Previously I had been on Neurontin (2700mg/day). I was also on Cymbalta and Klonipin. I have also been on several Narcotic painkillers such as Vicodin, Percoset, Oxycontin, Methadone, and Fentanyl.

    None of these seemed to help. The Neurontin and Cymbalta gave me such bad side effects (vision problems) they had to get me off of them.

    I have just weaned off of my last doses of any oral Narcotic, although I keep Oxycontin and Methadone around for the really bad days/nights.

    My current meds are delivered through an Intrathecal Pump. I have Prialt, Bipuvicane, and Fentanyl delivered to my nerves/brain at a constant rate.

    I highly recommend the IT Pump. With the click of a computer mouse, my Dr. can increase or decrease the meds at any time.

    I have been through the wringer with all of the tests and meds out there, my greatest advice, and I have read other posts stating this, you have to be seen by a Doctor who KNOWS, not has heard of, RSD. You will get the best and most current information and care from them.

    Thanks - K

     
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