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  • #16
    Neo, nice to see you post again. How are you doing? I was concerned about you last post.

    I tried Lyrica for extreme neuropathic pain (SCI-c7/c8) but it did not work for me. Too many side-effects... (I was allergic to it)..

    TAM, is your husband paralysed? I am confused, as in the past several months during your many entries, I thought you claimed he does not have a mobility impairment? You also do not have a SCI. You were not sure if he had Lyme disease, now you question cord damage?

    Good luck to you Neo, sorry cannot help with dosage ideas...
    Last edited by med100; 03-24-2010, 11:37 AM.

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    • #17
      Sorry for my late reply, I haven't been online all day.

      Well let's see, when I say split I didn't mean literally split the capsule, I was actually referring to the number of times I take it a day. That totally came out wrong and I can see why some people might have misinterpreted my post.

      Well I was trying to find out how much you guys are taking and what would bee too much. I understand now that it's OK if I tried to up the dose a little bit and see if it helps. Since some of you are taking a lot more than I'm getting at the moment. I don't like to play with drugs and I didn't want to OD.

      It's nice to see that some of you have got off it. I wish I could. I rely on Lyrica to function since my pain gets intolerable at times!

      I don't feel that Lyrica acts immediately, I'm lucky if the pain got better in an hour. Lately the pain got really worse and that's why I added another dose at night, but that didn't help so I would like to increase the dose.

      Every 8 hours now would be torture. I'm awake about 14-15 hours and I sleep between 9-10 hours. So that's why I take a pill every 4 hours. Maybe if I increased the dose I wouldn't need it as often as I do.

      Tam, I take it 4x because of the pain I get at night. I wake up at noon (LOL no mornings for my lazy ass) and then take a pill. Just when it's time for my next dose the pain starts to increase until it reaches the maximum at about 9 pm. All of the pills that I take in between don't work at all, at least I think so because the pain is too much I'm afraid of stopping and finding out that it's actually even worse without the med.

      Thanks, I'm coming to the US for rehab, hopefully at Shepherd in Atlanta, GA. I will be looking for some good doctors because I will need some things done there and one of them is my pain. I will definitely get suggestions here before doing anything.

      med100, Thanks man, I'm doing good and hopefully that episode is gone for good.

      I think I'll go to 150mg 3x a day and see if that helps. Hopefully that'll give me some relief.

      Guys, when you say side effects from Lyrica, what do you mean ? aside from allergies what are some of the side effects you're experiencing ?

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      • #18
        Thanks Neo - I think I misunderstood a little. I thought the pain was bad at night, while you were trying to sleep. So if I understand correctly, you sleep ok through the night, wake up and it isn't bad, but it increases throughout the day.

        So my idea of needing more at bedtime probably isn't right.

        I'd think there would likely not be harm in trying to take more - at what intervals, seems you and your doc may just have to experiment and see what works. If you take bigger doses 3 times a day - it may help. It's also possible you'd notice it not lasting until it's time for the next dose. Then, you and your doc would have to figure out how to adjust it.

        Whatever you do, do not suddenly stop taking Lyrica. If you were to stop, you'd have to taper off gradually - otherwise you risk having seizures.

        It can have various side effects. I've heard people often complain about mental fogginess, weight gain, and perhaps swlling in the limbs. If you go to their website, it should list all the side effects. Of course, most people don't get most of the side effects, they just have to list all of them.

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        • #19
          Originally posted by med100 View Post
          TAM, is your husband paralysed? I am confused, as in the past several months during your many entries, I thought you claimed he does not have a mobility impairment? You also do not have a SCI. You were not sure if he had Lyme disease, now you question cord damage?
          No, I have never said my husband was paralysed. I have also never "claimed" that he does not have a mobility impairment. He does walk - just with some problems. He is undiagnosed - many things are still possibilities.

          Of course I don't have an SCI, never said I did. Thankfully, I am healthy - very lucky in that regard.

          But this is somewhat off-topic from Neo's thread, I've posted many things elsewhere about my husband's problems and search for diagnosis.

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          • #20
            Originally posted by TAM63 View Post
            No, I have never said my husband was paralysed. I have also never "claimed" that he does not have a mobility impairment. He does walk - just with some problems. He is undiagnosed - many things are still possibilities.

            Of course I don't have an SCI, never said I did. Thankfully, I am healthy - very lucky in that regard.

            But this is somewhat off-topic from Neo's thread, I've posted many things elsewhere about my husband's problems and search for diagnosis.
            Not really off-topic, considering the OP ....


            Originally posted by Neo View Post

            Anyway, what I did was tell my doctor about the medication and he just prescribed it for me. Doctors have no experience with SCI-related neuro pain here.

            <snip>

            What do you guys recommend. I know I shouldn't get medical advice from a forum, but you're experiencing what I have so you're the closest thing I can get at the moment.
            I think Med100 was just trying to clarify whether your information came from any experience with a sci (sorry if I am mis-interpreting you Med100)
            T7-8 since Feb 2005

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            • #21
              Here is a study done in 2006 on Lyrica for SCI.

              http://www.medscape.com/viewarticle/548374

              Pregabalin Effective for Neuropathic Pain After Spinal Cord Injury

              The average dose of pregabalin after the 3-week stabilization phase was 460 mg/day.

              The most common adverse events with treatment were mild to moderate somnolence and dizziness, which were typically transient, they write. Edema occurred more often with pregabalin, in 20% of patients, vs 6% on placebo, and peripheral edema occurred in 10% of the pregabalin patients.

              Just for interest (sorry, not directly pertinant to Neo except listing the doses they are testing) there is a current study going on with Lyrica and SCI patients apparently:

              http://clinicaltrials.gov/ct/show/NCT00407745?order=16

              17-Week Trial To Assess Pregabalin For The Treatment Of Nerve Pain Due To Spinal Cord Injury

              The purpose of this study is to evaluate if pregabalin relieves nerve pain associated with spinal cord injury compared to placebo (pill that contains no active medicine). This study will also evaluate the safety of pregabalin in this patient population

              Pregabalin capsules taken twice daily up to 17 weeks (150-600 mg/day)

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              • #22
                Sjean,.... "I think Med100 was just trying to clarify whether your information came from any experience with a sci (sorry if I am mis-interpreting you Med100)..."

                Yes, That is correct. Thanks :-)

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                • #23
                  It feels strange responding to a poster called Neo (Trinity is actually my real name!)

                  With regards to Lyrica for break through pain I have, on several occasions, doubled up my dose on days when I get really bad pain with fair effect.
                  I normally take 175mg 3xday, I found I got much better pain cover with 3x rather than twice a day
                  sigpic

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                  • #24
                    The pain docs I know seem to prescribe 3 times a day usually. It would seem logical from a side effects and coverage standpoint.

                    What I did see sometimes was, it'd be twice a day or three times, depending upon the total dose they were trying to prescribe and the mg the pills came in. Whichever added up easier. But I still think 3 times was prescribed more often.

                    I do not know this for a fact, but it almost seems that the number of times per day is whatever works for you (I wouldn't think taking one huge dose would be advisable though).

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                    • #25
                      TAM, just a suggestion, but if you don't know, as you state in the post above, and you are ab, your husband does not live with paralysis, why offer a suggestion about what you think works and/or post you don't know? Why not just read if that is where your bent is? Why post if it's a subject you are not dealing and living with personally and you're just grabbing generic info elsewhere?

                      I'm just not getting it somehow.

                      Any of us may use Google, check WebMD or whatever sites you're hitting for general, generic, one size fits some info.

                      We get the drug interaction and possible side fx info sheets when we have our rx-es filled. That sheet is included with the med from most places whether a chain or indie pharm. We may not keep it if we've taken a medication previously because we think we know or because previously we have not had unwanted side fx.

                      Often we learn most and best from each other, from actual, real life, yep, I live with paralysis (or my spouse does) and it's happening/happened to me, too, experiences. If we just wanted to know what any old generic info said, we could Google or bing or whatev.

                      As most of us know, too many of our own physicians have not well understood paralysis and SCI. When those individuals don't, you can imagine how well Google/WebMD/whatever else you post will fit us.

                      I'm not attempting to be rude, just offering a suggestion. If you are not **taking/using/performing/prescribing/dispensing** the **med/device/procedure/exercise/etc.** for paralysis, and don't have direct, personal experience with the aforementioned, aren't paralyzed in some way and/or don't have SO with paralysis, why guess, write you don't know or grab generic info off the web "for" us?

                      Finally, to the OP and others wondering about direct experience with Lyrica for pain and any possible side effects, it caused me near immediate weight gain and severe depression. I don't do depressed and I'm too short to gain weight like I did. I was weaned off, switched back to gabapentin. The horrid depression began to lift. The crazy weight ballooning stopped.

                      I'm working to lose the weight through healthy eating and exercising. It's slow going, but I'll get there.

                      I've weaned again from gabapentin other than what is necessary for seizure control (it does double duty w/another anti-ep med), and managing to function. For pain management I'm using adaptive yoga, meditation, p/t to help strengthen and better use what I can and the low dose gabapentin. At the greatly reduced dose, the gabapentin is not causing brain fog.

                      Hope you find what works for you.

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                      • #26
                        You know, I didn't just grab generic info. For my husband's privacy, I don't disclose all our details. Especially given recent events.

                        But fine - you can win. I didn't join the site to be stressed out. Thanks to Wise and those who have been helpful.

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                        • #27
                          Thanks guys, I just started taking 150mg 3x a day every 6 hours and will see what happen. How long does it usually take for it to work ? I only have one strip and don't know if that will be enough.

                          LaMemChose, yes I did notice that I have gained weight, I didn't know if its from my meds or just my lack of exercise. It may be a combination of both though. I also can't stop the drug because of my pain, but I will definitely try to find a pain doc when I get to the US and hopefully we will find something that works.

                          I appreciate your help CC.

                          - Neo

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                          • #28
                            Neo, I haven;t gained weight, but I understand from others I have talked to I am in the minority .... so you probably want to keep an eye on that. Those that gained, did so very quickly too I believe.
                            T7-8 since Feb 2005

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                            • #29
                              You ain't kidding on the weight gain! I've only been taking it less than two months and already I've noticed a considerable change in my waistline. I have to really watch what I eat now. I'm hungry all the time.

                              You might want to get some more Lyrica ready before you run out Neo, the withdrawl is nasty.

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                              • #30
                                I was bedridden for a long time because of a nasty bed sore so I didn't know if it were from that or Lyrica. I will keep an eye on the weight gain for sure.

                                I am noticing a difference already, the pain seems to be less and yesterday I went for about 7 and a half hours before noticing that I need my next dose. I'm not sure if it's real or placebo but I'm happy either way.

                                I still have stock of the 75mg capsules, I can take two at a time until my next order. I will get 150mg from now on. I know better than to stop Lyrica cold turkey. From what I read withdrawal is really a bitch.

                                - Neo

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