lyrica related to gbs??? help me find out

    • Anonymous
      May 12, 2006 at 12:59 pm

      hi all,

      would the person or persons who posted about lyrica’s paperwork saying there was a chance of getting gbs from it pls let me know by posting on this thread or privately if you can remember where it was you saw this. i’m trying to confirm this. if there was some error in reading the paperwork no biggie just trying to find out what it is. if anyone has any leads for me, pls e or pm me. thx. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 12, 2006 at 2:03 pm

      I “think” I have the insert somewhere around here. Give me a day or two to sort through the piles of debris on the desk.

    • Anonymous
      May 12, 2006 at 2:23 pm

      Hi Gene,

      I have been searching the net looking fo any clue that Lyrica could cause GBS, I haven’t found anything that comes close. What I did find was that Lyrica can cause side effects such as”

      Burning in hands and feet
      Tingling in hands and feet
      Unsteady walking
      Pins and Needles
      Numbness
      Muscle twitching
      Muscle pain
      Loss of energy
      Joint pain

      All of this side effects certainly mimic GBS, but nothing says it causes it.

      Here is the link i just used as example of the effects.

      [url]http://www.drugs.com/cons/Lyrica_Systemic.html[/url]

      Hope Mike can find the insert for the information you are seeking.

      ๐Ÿ™‚

    • Anonymous
      May 12, 2006 at 2:49 pm

      Brandy –

      bluangel posted a reference on another thread regarding Lyrica that lists GBS as “[FONT=TimesNewRomanPS-BoldMT]Other Adverse Events Observed During the Clinical Studies of LYRICA” in the Nervous System paragraph[/FONT] on page 36. Here is the reference…

      [URL=”http://www.pfizer.com/pfizer/download/uspi_lyrica.pdf”]http://www.pfizer.com/pfizer/download/uspi_lyrica.pdf[/URL]

      Hope this helps.

    • Anonymous
      May 12, 2006 at 3:07 pm

      Kathryn Thanks for the information yes you are right on page 36. The list is really big an lots of the chances of getting something. Most are rare chance so we have to make the informed decision on that.

      Thanks
      Sue

    • Anonymous
      May 12, 2006 at 4:35 pm

      Thanks for that web site. Holy moly, I can’t believe it does say that. But then again, we have to be careful with any medications we use. We don’t know what they really do to the body. But on the other hand there are great meds out there that have cured many a disease.

      Sometimes don’t you feel like “damned if I do and damned if I don’t” ๐Ÿ™ ๐Ÿ™

    • Anonymous
      May 12, 2006 at 7:55 pm

      I couldn’t believe what I was reading. Thanks Kathryn for the website. I got a lot of information from the pharmacist when I got the medication but it did not state GBS as a rare side effect. I rang the pharmacist today and asked if they had anymore info on it but they said that they know little about the drug as I am the first one they have sold it to. Great!!!!

      I will check with my specialist on Monday if I can get a hold of her otherwise I will see my GP.

      Thanks Guys for your help.

      Debbie

    • Anonymous
      May 12, 2006 at 8:22 pm

      i checked on medscape about the sideeffects/reactions of lyrica. they are very similar to gbs, but gbs is not stated per name wise as a reaction. peripheral edema, general weakness, neuropathy, pain, back pain, chest pain, concentration difficulty, cramps in legs, dyspnea, flu-like symptoms, gait abnormality, muscle weakness, myalgia, paresthesia, tremors, twitching, and visual changes. with the peripheral edema why would drs perscribe this med for cidp or gbs patients?! i for one will never take this med again!:eek:

    • Anonymous
      May 12, 2006 at 10:08 pm

      Thank you Kathryn, I posted the same information on the other thread, but was tired and gave the wrong page number. Glad you found that.

    • Anonymous
      May 12, 2006 at 10:16 pm

      When I go to the pharmacy, they give you a paper with side effects etc listed. Instead of just getting that, ask the phamacist for the “Package insert information” That will give you the same paperwork the docs get, and will have all the information as that page directly from pfizer. Everything from the chemical compositions to dosing, and all effects and studies. I believe they are required to provide that to you if you ask them for it, but most times, will never just give it out. Also, if you can’t get one there, google the lab that makes the drug, and they should beable to provide it there as well. Don’t look for patient information, look for prescribing information.

      I don’t know if you all knew that, just hoping it helps someone. Unfortunately, I am taking lyrica, and that was the one package insert I did not ask for. Figures…lol..

    • Anonymous
      May 12, 2006 at 10:29 pm

      to all & all who posted,

      thx to all. you have come up w what i also found. the next few days may be more telling.

      [url]http://www.pfizer.com/pfizer/download/uspi_neurontin.pdf[/url]
      seems like neurontin has similar adverse effects. if all else is abt equal [i don’t know that to be a fact cuz its chemical makeup is differetn] except lyrica does not

      have to be taken as often, i wonder if the much higher cost is worth it? thinking back it did

      come out about the time neurontin came out w a generic which drove the price down. speaking of

      peripheral edema i now wonder if my feet stopped swelling cuz i was reducing my neurontin or not?

      take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 13, 2006 at 5:16 am

      The info on the site posted by Kathryn provides an absolutely massive list of treatment- emergent adverse events reported by patients treated with LYRICA during all trials. Those so treated would only be folk with diabetic epilepsy I presume. No point, even during trials, of trying anyone with LYRICA.
      Rare means fewer than 1/1000! Goodness me. How many took part in the trials to get that result for GBS?
      The list of adverse events seems to me to be so big that it is the producer possibly guarding their back by listing so many.
      I cannot see how this drug could in itself lead to an auto-immune disorder such as GBS. It would have to lead to the inflammation and demyelination.

    • Anonymous
      May 13, 2006 at 10:21 am

      I posted the following on the UK site earlier today but was called by “higher management” to something more serious – lunch! No time then to post it here.

      I have done a little more research about thre trials for Lyrica.
      According to Pfizer’s own site [URL=”http://www.pfizer.com/pfizer/are/news_releases/2005pr/mn_2005_0613a.jsp”]http://www.pfizer.com/pfizer/are/news_releases/2005pr/mn_2005_0613a.jsp[/URL] “The efficacy of Lyrica was established in three double-blind, controlled trials involving 1,052 patients.” It also reported: “The most common side effects across all Lyrica clinical trials were dizziness, somnolence, dry mouth, peripheral edema, blurred vision, weight gain and difficulty with concentration/attention. The discontinuation rate due to side effects was low.”
      Medical News Today – [URL=”http://www.medicalnewstoday.com/medicalnews.php?newsid=40404″]http://www.medicalnewstoday.com/medicalnews.php?newsid=40404[/URL] reports: “Lyrica’s approval was based on five randomized double-blind clinical trials involving over 2,000 patients. Data from a combination of five placebo-controlled studies demonstrate that Lyrica provides rapid and sustained efficacy for the treatment of GAD.” [GAD is general anxiety disorder.]
      Pharmacy Times – [URL=”http://www.pharmacytimes.com/Article.cfm?Menu=1&ID=2795″]http://www.pharmacytimes.com/Article.cfm?Menu=1&ID=2795[/URL] reports of side-effects: “The most common adverse effects reported from the trials were dizziness, somnolence, weight gain, peripheral edema, blurred vision, diplopia, headache, ataxia, and gastrointestinal disturbances.8-12 Lyrica is in FDA pregnancy category C.5 Dose adjustment is recommended in patients with CrCl <60 mL/min.6"

      If at the most there were 2,000 patients in the trial I do not accept that a GBS case would arise even as a rare effect.
      ๐Ÿ˜ฎ

    • Anonymous
      May 13, 2006 at 9:31 pm

      Hi all,

      I started taking Lyrica a couple months ago and my neuro told me that, strange enough, some of the listed side effects mimick peripheral neuropathy. Concerning side effects let’s keep in mind that in the US, anything mentioned by patients or doctors during a clinical trial that amounts to 2% of the group has to be listed as a side effect. So the ones listed as rare are reported by less than 2% of the group. I agree, it seems unlikely that GBS was caused by Lyrica, but if one person had a case of GBS that was in the clinical trial, Pfizer would list it if for no other reason than liability concerns.

      Looking at the side effects listed on the page 36 link posted previously I have:
      Increased appetite (just what I need)
      Stupor (what are we talking about?)
      Eczema (on my face non the less)
      Tinnitus is worse
      and that feeling of being “high” ๐Ÿ˜€ (not that I’m complaining about that!)

      I must say, however, Lyrica’s ability to completely kill the pain in my feet – so what about the side effects!

    • Anonymous
      May 14, 2006 at 8:38 am

      if nothing else comes of this thread, i think eric covered it best. what he says makes sense & covers all bases. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 14, 2006 at 2:09 pm

      Eric you report: “Tinnitus is worse.”
      Did you have tinnitus pre Lyrica? Had you been on gabapentin/neurontin?
      I ask because I am having a wearing time with intermittent tinnitus accompanied by loads of mucus. Did not exist pre my heart attack 4 years ago but seemed to come on with the medication post by-pass surgery. :confused:

    • Anonymous
      May 14, 2006 at 2:48 pm

      No, my tinnitus was self induced I’m sorry to say. ๐Ÿ™ 1970’s rock concerts along with listening to blasting music with headphones on. Who knew? :confused:

      For a long time I just thought what was happening to my hearing was just normal, everyone heard the high pitched “background noise”. You hear things said about ears “ringing” so I just thought it was a normal thing. I’ve always been able to kind of filter it out, or ignore it. Not until several years ago did I even know that there is such a thing called tinnitus.

      Since Lyrica, however, the tinnitus sometimes interferes with my hearing. I can’t filter it out at times and I can’t hear certain frequencies as well. Also, there are times when it seems to be really bad and I can’t think about anything else but that high pitched staccato tone in my head. I’ll be talking with the neuro about it in the near future. However, so far, the tinnitus isn’t nearly bad enough to out weigh the pain in my feet.

    • Anonymous
      May 14, 2006 at 3:59 pm

      The problem days are when the raging storm of tinnitus co-incides with the really seriously painful feet times – as today worsened by the mini-lows of atmospheric pressure which I and some others with CIDP type experience.

      Top and bottom exhaustion takes some bearing. I tend to come on my computer as a distraction, especially from the pain. Normal neuropathy pain I can cope with aided by Gabapentin. Loaded pain is a bit much.:eek:

    • Anonymous
      May 15, 2006 at 6:36 am

      I feel a little rested tonight about Lyrica. My specialist rang me and we talked about the drug. She said it is a great drug and I should stick with it. She said I would not get GBS from it.

      THanks to all who posted
      Debbie

    • Anonymous
      May 15, 2006 at 8:17 am

      kens,

      from your post i’m guessing that your taking of gabapentin aids in pain relief for your feet but does not make it go away. a few years ago at 2400 mg/day that’s all it did for me too. how much do you take? now, although i am down to 300 mg/day of it, i still get the same pain but on a much lower scale. i have a huge inventory neurontin. have you ever or are you considering switching to lyrica since some folks say it is a better pain reliever? sorry to hear of your probs. it can not be fun. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 15, 2006 at 9:11 am

      2400mg a day is normally OK for the job. I cope quite well then. It’s when the extra tightness comes in from the mini-low pressure problems arrive that real pain arrives.
      Amazingly whilst in town for some humdrum shopping this morning I met a friend (I’m godfather to youngest son) who has a similar neuropathy (actually thought to be idiopathic axonal neuropathy). She said that she had also been at screaming point for 2 days for the same reason. The mini-lows. A man with CIDP, rather sensory, only some 6-7 miles away similarly suffers!:D

    • Anonymous
      May 21, 2006 at 8:31 am

      I can NOT believe I’m reading this. My PCP has been talking about replacing my Nuerotin and Requip with Lyrica, since I’m still having many problems and was hoping the switch might do the trick, especially due to the side effects I’m getting with current meds. Not sure I want to go this route then. My CIDP i enough to handle and I would to taking it to relieve the side effects I’m seeing as most likely to happen. ๐Ÿ˜ฎ Sure glad I read this before my appointment on Wednesday.

    • Anonymous
      May 21, 2006 at 9:42 am

      Karen,
      I suggest that you go back along these threads. Lyrica’s long list of side-effects is similar to that of gabapentin/neurontin. There are so many things you COULD get worried about there but if the drug does the job why worry.
      My strong view is that this thread started off with a myth – “there was a chance of getting gbs from it.” There is absolutely NO evidence to support this.
      I do not understand why we should stray into mythology when involved with these difficult neuropathies. There is much better clinical evidence as to possible explanations of why GBS starts – and in the direction of CIDP etcetera.:confused:

    • Anonymous
      May 21, 2006 at 10:05 am

      karen,
      it seems kens is right. neurontin & lyrica are at abt equal risk.

      kens,
      this point of view from another gbser never got to the myth status, just prolly a misread of the paper work. i do not believe in straying into mythology either. but i do believe in investigating possibilites that might have an effect. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 21, 2006 at 11:08 pm

      My neurologist gave me some samples of Lyrica to try.

      I took exactly 2, and that was it. =)

      I woke up during the night, with *massive* tremors.
      My entire body was shaking.
      It took nearly 3 hours before they went away.
      It was very very frightening.

      I am more than happy to just remain on Neurontin.

      Scott

    • Anonymous
      May 31, 2006 at 5:20 am

      i would like to apologize to the gbser on the old forum who originally said the lyrica was a cause of gbs. turns out she is right. in rare cases it does cause gbs. see link for info.

      [url]http://gbs-cidp.org/forums/showthread.php?t=181[/url]

      if anyone wants to research to see if neurontin does the same, it would be interesting. so, unless new info surfaces, i would have to put lyrica in the flu shot catagory. personally i would recommend trying neurontin & other pain relief meds first before trying lyrica.

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 31, 2006 at 5:47 am

      Gene like Eric posted “it seems unlikely that GBS was caused by Lyrica, but if one person had a case of GBS that was in the clinical trial, Pfizer would list it if for no other reason than liability concerns.
      So that amy be what happen who knows. Everybody has to weigh the decision they make.”

      Sue

      [QUOTE=ericvance]Hi all,

      I started taking Lyrica a couple months ago and my neuro told me that, strange enough, some of the listed side effects mimick peripheral neuropathy. Concerning side effects let’s keep in mind that in the US, anything mentioned by patients or doctors during a clinical trial that amounts to 2% of the group has to be listed as a side effect. So the ones listed as rare are reported by less than 2% of the group. I agree, it seems unlikely that GBS was caused by Lyrica, but if one person had a case of GBS that was in the clinical trial, Pfizer would list it if for no other reason than liability concerns.

      Looking at the side effects listed on the page 36 link posted previously I have:
      Increased appetite (just what I need)
      Stupor (what are we talking about?)
      Eczema (on my face non the less)
      Tinnitus is worse
      and that feeling of being “high” ๐Ÿ˜€ (not that I’m complaining about that!)

      I must say, however, Lyrica’s ability to completely kill the pain in my feet – so what about the side effects![/QUOTE]