Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Steve Neurontin is widely used for neuropathy pain. I am not taking it, but both of my parents took it. My mother had mito. She had cardiomyopathy. Can you ask the cardiologist about it. He might be willing to discuss how it might affect your heart. Neurontin can be ramped down as well as up, 900 mg is a fairly low dose as well, which should make it easier to do this if needed. laurie > Hi all > > My neuro doc has just given me a prescription for neurontin, for my > considerable peripheral neuropathy. From what little I've found online so > far, I am concerned. > > First, there are listed a number of side effects that are the very things > I'm already suffering from: headache, drowsiness, and fatigue, even seizure > (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a > year or so) fairly mild chest pains, and only just saw a cardio doc (who did > EKG confirming my right bundle branch block, and chest Xray for heart size, > will be doing echo, and probably, adenosine stress test). So I wonder if the > neurontin will make this worse. Second, although my doctor did give me a > detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), > he didn't say what to do if I have any ill effects. Online, I find I > shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't > discuss this. Thirdly, this doc has been notoriously difficult to reach (but > getting better), and I wonder how or with whom I will be able to discuss any > problems. Even asking him THIS is problematic, since I forgot to bring it up > myself in my twenty minute window of access. > > Any opinions or concerns, or satisfied (or not) users? > > Thanks > Steve D. > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 There used to be several people in this group taking Neurontin--maybe still are? I think Adrienne was on a high dose. Numerous doctors have offered it to me, but I have always turned it down for various reasons, some of which you mention. It does seem to work well for some people. I've heard pro and con stories. Barbara > Re: neurontin??? > > Steve > > Neurontin is widely used for neuropathy pain. I am not taking it, but > both of my parents took it. My mother had mito. She had > cardiomyopathy. > > Can you ask the cardiologist about it. He might be willing to discuss > how it might affect your heart. > > Neurontin can be ramped down as well as up, 900 mg is a fairly low > dose as well, which should make it easier to do this if needed. > > laurie > > > > Hi all > > > > My neuro doc has just given me a prescription for neurontin, for my > > considerable peripheral neuropathy. From what little I've found online so > > far, I am concerned. > > > > First, there are listed a number of side effects that are the very things > > I'm already suffering from: headache, drowsiness, and fatigue, even seizure > > (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a > > year or so) fairly mild chest pains, and only just saw a cardio doc (who did > > EKG confirming my right bundle branch block, and chest Xray for heart size, > > will be doing echo, and probably, adenosine stress test). So I wonder if the > > neurontin will make this worse. Second, although my doctor did give me a > > detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), > > he didn't say what to do if I have any ill effects. Online, I find I > > shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't > > discuss this. Thirdly, this doc has been notoriously difficult to reach (but > > getting better), and I wonder how or with whom I will be able to discuss any > > problems. Even asking him THIS is problematic, since I forgot to bring it up > > myself in my twenty minute window of access. > > > > Any opinions or concerns, or satisfied (or not) users? > > > > Thanks > > Steve D. > > > > > > > > Medical advice, information, opinions, data and statements contained herein are > not necessarily those of the list moderators. The author of this e mail is entirely > responsible for its content. List members are reminded of their responsibility to > evaluate the content of the postings and consult with their physicians regarding > changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 My current neurologist started me on 300 mg of neurotin as soon as all of the parkinsons meds were out of my system for my periphal neuropathy then my opthamalogist found that I also have trimenigal neuralgia in my right eye, side of my face and ear so my neurologist changed the dosage from 300mg to 400 mg daily (with dosage to be increased as needed), so far I am still on just 400 and since my swelling is almost gone at this time my neuropathy is better Of course, I do still use my $2,500 Antodyne Therapy Machine for my neuropathy several times a week. All of my other doctors see my med list that was updated during my recent hospitalization and even my recent cardiologist had any qualms about any of my meds except for celebrex and that is one I no longer take. Dolores Steve micro_choice@...> wrote: Hi all My neuro doc has just given me a prescription for neurontin, for my considerable peripheral neuropathy. From what little I've found online so far, I am concerned. First, there are listed a number of side effects that are the very things I'm already suffering from: headache, drowsiness, and fatigue, even seizure (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a year or so) fairly mild chest pains, and only just saw a cardio doc (who did EKG confirming my right bundle branch block, and chest Xray for heart size, will be doing echo, and probably, adenosine stress test). So I wonder if the neurontin will make this worse. Second, although my doctor did give me a detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), he didn't say what to do if I have any ill effects. Online, I find I shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't discuss this. Thirdly, this doc has been notoriously difficult to reach (but getting better), and I wonder how or with whom I will be able to discuss any problems. Even asking him THIS is problematic, since I forgot to bring it up myself in my twenty minute window of access. Any opinions or concerns, or satisfied (or not) users? Thanks Steve D. Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Neuronitin is a med with a very safe side effect profile. It is a seizure med. No seizure med should be stopped abruptly. You could have an increase in seizures if you stop abruptly. My son is 16 and takes 1200 mg of neurontin three times daily (total 3600mg/d). I'm a nurse and the biggest problem I've seen with neurontin is that it doesn't work--mostly due to underdosing. The biggest problem with neurontin is that it can cause you to be tired. This is a problem when you start. If you start with very low dosing and slowly go up over several weeks, you shouldn't have this problem. Nearly every med out there has a listed side effect of headache, nausea and vomiting. Sounds like your eventual total daily dose will still be quite low. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Steve, My neuro also just prescribed neurontin hoping it would enable me to exercise more. I haven't started yet; like you I'm hesitant to start a new drug. My primary care doctor thinks its a great idea and will monitor my progress. I'm still hesitant to start on this, but I've started to document my progress with exercise (w/o the drug) so that I have something to use for comparison. Anyway, just wanted to suggest that maybe your primary care doctor can help with some of your concerns. Maggie > Hi all > > My neuro doc has just given me a prescription for neurontin, for my > considerable peripheral neuropathy. From what little I've found online so > far, I am concerned. > > First, there are listed a number of side effects that are the very things > I'm already suffering from: headache, drowsiness, and fatigue, even seizure > (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a > year or so) fairly mild chest pains, and only just saw a cardio doc (who did > EKG confirming my right bundle branch block, and chest Xray for heart size, > will be doing echo, and probably, adenosine stress test). So I wonder if the > neurontin will make this worse. Second, although my doctor did give me a > detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), > he didn't say what to do if I have any ill effects. Online, I find I > shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't > discuss this. Thirdly, this doc has been notoriously difficult to reach (but > getting better), and I wonder how or with whom I will be able to discuss any > problems. Even asking him THIS is problematic, since I forgot to bring it up > myself in my twenty minute window of access. > > Any opinions or concerns, or satisfied (or not) users? > > Thanks > Steve D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Steve, I have been on Neurontin for about 5 years now. At first, I felt fatigue with it, but I do not have any side effects from it now. I get some relief from my headaches from it, along with using it for neuropathy issues. It really has helped my restless legs. Last week my neuro just pushed me up to 1200 mg twice a day. I know it doesn't work for everyone, but for me, it has been very beneficial. Smiles, a On Sat, 3 Sep 2005 11:09:33 -0400 " Steve " micro_choice@...> writes: Hi all My neuro doc has just given me a prescription for neurontin, for my considerable peripheral neuropathy. From what little I've found online so far, I am concerned. First, there are listed a number of side effects that are the very things I'm already suffering from: headache, drowsiness, and fatigue, even seizure (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a year or so) fairly mild chest pains, and only just saw a cardio doc (who did EKG confirming my right bundle branch block, and chest Xray for heart size, will be doing echo, and probably, adenosine stress test). So I wonder if the neurontin will make this worse. Second, although my doctor did give me a detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), he didn't say what to do if I have any ill effects. Online, I find I shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't discuss this. Thirdly, this doc has been notoriously difficult to reach (but getting better), and I wonder how or with whom I will be able to discuss any problems. Even asking him THIS is problematic, since I forgot to bring it up myself in my twenty minute window of access. Any opinions or concerns, or satisfied (or not) users? Thanks Steve D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Hi Steve, Our daughters both take 1400 mg of Neurontin three times each day. It was one of the first medications recommended by Dr. Cohen for treating their migraine headahes, neuropathic abdominal pain and peripheral neuropathy. THe dosage was started significantly lower and gradually increased. Every mito specialist that has evaluated the girls has siad this is one of the safest medications of all that they currently take. The only side effect that I have consistantly noticed has been a few days of sleepiness or tiredness (which has always been resolved within three days). Everybody is different and soem individuals have definitely had problems with Neurontin, but, overall, I have heard far more positive responses than negative. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Hello Steve, Dewayne is on 4500 mg of neurontin per day and does well with it. He has some mental slowness and confusion which I used to attribute to that dose, but I do believe now it is just the disease. He has been on that dose for 3-4 yrs now along with his other meds. You will just have to try it and see.....ramping up is good and you basically do the same thing to get off of it. ( we tried that once). Take care! Lynda R. neurontin??? Hi all My neuro doc has just given me a prescription for neurontin, for my considerable peripheral neuropathy. From what little I've found online so far, I am concerned. First, there are listed a number of side effects that are the very things I'm already suffering from: headache, drowsiness, and fatigue, even seizure (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a year or so) fairly mild chest pains, and only just saw a cardio doc (who did EKG confirming my right bundle branch block, and chest Xray for heart size, will be doing echo, and probably, adenosine stress test). So I wonder if the neurontin will make this worse. Second, although my doctor did give me a detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), he didn't say what to do if I have any ill effects. Online, I find I shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't discuss this. Thirdly, this doc has been notoriously difficult to reach (but getting better), and I wonder how or with whom I will be able to discuss any problems. Even asking him THIS is problematic, since I forgot to bring it up myself in my twenty minute window of access. Any opinions or concerns, or satisfied (or not) users? Thanks Steve D. Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 My uncle was on Neurontin for a while, and eventually switched to a different drug (don't recall that drug's name, maybe Lamictal?) and had success on that. The concern I would have with Neurontin is related to the fact they don't know how it works - it's structure is like GABA, which is a neurotransmitter that " calms " one down, but doesn't seem to work on the GABA neurotransmitter system, rather " possibly " voltage gated calcium ion channels. There is some caution about driving while on it, did your doctor discuss that? I discussed it once with my doctor, and decided against it. Pfizer got into trouble trying to market Neurontin to treat everything under the sun. Any drug that requires such a large amount (over 1,000 mg per day) of drug automatically brings up side effect concerns, companies try to develop drugs that are active in much smaller amounts so they are specific for the target. I'm wondering Lynda, did the doctors tell you that that dosage is very high? Does Dewayne have kidney issues (see the prescribing info)? When one is treating symptoms as opposed to a disease, one has to decide how bad they feel the symptom is. I would rather put up with my nerve pain (which honestly is minor but a bit annoying) than start to treat it. YMMV, I'm not a medical doctor, this is just my opinions on this. Here's a link to the prescribing info: http://www.pfizer.com/pfizer/download/uspi_neurontin.pdf note that it is only " on-label " for postherpetic neuralgia (pain after shingles) and epilepsy (hence why they got into trouble for marketing it as treating other things). Take care, RH > Hello Steve, > Dewayne is on 4500 mg of neurontin per day and does well with it. He has some mental slowness and confusion which I used to attribute to that dose, but I do believe now it is just the disease. He has been on that dose for 3-4 yrs now along with his other meds. You will just have to try it and see.....ramping up is good and you basically do the same thing to get off of it. ( we tried that once). Take care! > Lynda R. > neurontin??? > > > Hi all > > My neuro doc has just given me a prescription for neurontin, for my > considerable peripheral neuropathy. From what little I've found online so > far, I am concerned. > > First, there are listed a number of side effects that are the very things > I'm already suffering from: headache, drowsiness, and fatigue, even seizure > (with MERRF, my myoclonus epilepsy is mild SO FAR). I also have had (for a > year or so) fairly mild chest pains, and only just saw a cardio doc (who did > EKG confirming my right bundle branch block, and chest Xray for heart size, > will be doing echo, and probably, adenosine stress test). So I wonder if the > neurontin will make this worse. Second, although my doctor did give me a > detailed chart for ramping up over nine weeks (eventually to 900 mg. daily), > he didn't say what to do if I have any ill effects. Online, I find I > shouldn't abruptly stop (but I suppose I can ramp down) but my doc didn't > discuss this. Thirdly, this doc has been notoriously difficult to reach (but > getting better), and I wonder how or with whom I will be able to discuss any > problems. Even asking him THIS is problematic, since I forgot to bring it up > myself in my twenty minute window of access. > > Any opinions or concerns, or satisfied (or not) users? > > Thanks > Steve D. > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 RH My comments interspersed. > There is some caution about driving while on it, did your doctor > discuss that? Thanks for that point, I did find that online. My approach is to be cautious until I know my reaction. I routinely drive while taking (albeit small amounts of ) Fiorinal (contains barbiturates), for headaches. Life is risky...I try to be responsible. My neuro doctor doesn't discuss much of anything with me, unless I force the issue. I need to be pro-active and armed with all the evidence I can muster, in order to get him to do anything. Sort of like a lawyer preparing for court, I even make a list of his objections (to my requested surgery, for instance) with my rebuttal points. This is not to say I am trying to overcome reasonable reluctance on his part, but rather that he forgets the details of my case and I need to remind him. I've also learned (after I left that appt.) that, like for many drugs, liver disease is a counter-indicator for Neurontin. I have hepatic steatosis (fatty liver) which has probably been caused or exacerbated by my lipid storage disorder. Hence I'm concerned about the efficiency of my liver (i.e. the works may be " gummed up " or somewhat blocked). My doctor ought to know that I have this liver condition (I've reported it, and it's on the list of symptoms and test results that I gave him), but I'm sure he wouldn't remember it. > [...] > When one is treating symptoms as opposed to a disease, one has to > decide how bad they feel the symptom is. I would rather put up with > my nerve pain (which honestly is minor but a bit annoying) than start > to treat it. I absolutely agree. My PN has gradually worsened, and now almost always interferes with what little sleep I am able to get. I wish I could take this just at night. > Here's a link to the prescribing info: > http://www.pfizer.com/pfizer/download/uspi_neurontin.pdf Thanks so much for this link. When I asked CVS for the " product package insert " , the pharmacist gave me this funny condescending look and said that would be covered on their information cover sheet. When I asked " Isn't that just a summary of the full insert? " she brushed me off. I have to go back, because they have this drug listed as requiring " pre-approval " from the health insurer (MassHealth). I'm thinking of bringing some witnesses, and asking for this again. Isn't this illegal, or something, when a patient specifically asks for the FDA-mandated disclosure sheet? What other purpose does it serve, if not to inform patients? I know the " reverse-placebo " effect, where some people will develop mentioned side effects even on placebo, but that doesn't excuse not getting full disclosure from CVS. I think we all need to by hyper-aware of reported interactions and side effects for two reasons: 1) What is found to be a " rare " interaction in the general public might very well be common in our rare population of mito. 2) Doctors aren't (always) so smart. They are (all too often) in a hurry. They have been trained to make snap judgements. It's not THEIR lives that are affected. The Pfizer pdf says for Neurontin that there is some decreased activity of one P450 isoform, namely CYP2A6. But I'm guessing :-) that the CVS summary cover doesn't mention this. Suppose I KNEW I had a dysfunction in this very enzyme? The pdf also warns of " infrequent elevated liver function tests " . But I suppose all my doctors, including my new cardio doc, will automatically pore over the 27-page sheet, once I report using this drug, so there's no need for ME to worry..... > [...] > Take care, > RH Steve D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 My brother takes what amounts to a small amount of Valium on a regular basis to treat anxiety disorder - it doesn't make him sleepy and driving makes him anxious so it's a necessity. I'm glad the prescribing info helped, remember that prescribing info is almost always available on the Internet (for doctors I suppose) so do a search on " " " prescribing information " on google and you should find it. That's how I found out about the rare side effect from Carnitor of seizures (I won the prize on that one). All we can do is make sure the doctors know as much about our condition as they can, and let them decide. It sounds like you are an informed patient, so that's a good thing. Take care, RH > RH > > My comments interspersed. > > > There is some caution about driving while on it, did your doctor > > discuss that? > > Thanks for that point, I did find that online. My approach is to be cautious > until I know my reaction. I routinely drive while taking (albeit small > amounts of ) Fiorinal (contains barbiturates), for headaches. Life is > risky...I try to be responsible. > > My neuro doctor doesn't discuss much of anything with me, unless I force the > issue. I need to be pro-active and armed with all the evidence I can muster, > in order to get him to do anything. Sort of like a lawyer preparing for > court, I even make a list of his objections (to my requested surgery, for > instance) with my rebuttal points. This is not to say I am trying to > overcome reasonable reluctance on his part, but rather that he forgets the > details of my case and I need to remind him. > > I've also learned (after I left that appt.) that, like for many drugs, liver > disease is a counter-indicator for Neurontin. I have hepatic steatosis > (fatty liver) which has probably been caused or exacerbated by my lipid > storage disorder. Hence I'm concerned about the efficiency of my liver (i.e. > the works may be " gummed up " or somewhat blocked). My doctor ought to know > that I have this liver condition (I've reported it, and it's on the list of > symptoms and test results that I gave him), but I'm sure he wouldn't > remember it. > > > [...] > > When one is treating symptoms as opposed to a disease, one has to > > decide how bad they feel the symptom is. I would rather put up with > > my nerve pain (which honestly is minor but a bit annoying) than start > > to treat it. > > I absolutely agree. My PN has gradually worsened, and now almost always > interferes with what little sleep I am able to get. I wish I could take this > just at night. > > > Here's a link to the prescribing info: > > http://www.pfizer.com/pfizer/download/uspi_neurontin.pdf > > Thanks so much for this link. When I asked CVS for the " product package > insert " , the pharmacist gave me this funny condescending look and said that > would be covered on their information cover sheet. When I asked " Isn't that > just a summary of the full insert? " she brushed me off. I have to go back, > because they have this drug listed as requiring " pre-approval " from the > health insurer (MassHealth). I'm thinking of bringing some witnesses, and > asking for this again. Isn't this illegal, or something, when a patient > specifically asks for the FDA-mandated disclosure sheet? What other purpose > does it serve, if not to inform patients? I know the " reverse- placebo " > effect, where some people will develop mentioned side effects even on > placebo, but that doesn't excuse not getting full disclosure from CVS. > > I think we all need to by hyper-aware of reported interactions and side > effects for two reasons: > 1) What is found to be a " rare " interaction in the general public might very > well be common in our rare population of mito. > 2) Doctors aren't (always) so smart. They are (all too often) in a hurry. > They have been trained to make snap judgements. It's not THEIR lives that > are affected. > > The Pfizer pdf says for Neurontin that there is some decreased activity of > one P450 isoform, namely CYP2A6. But I'm guessing :-) that the CVS summary > cover doesn't mention this. Suppose I KNEW I had a dysfunction in this very > enzyme? The pdf also warns of " infrequent elevated liver function tests " . > But I suppose all my doctors, including my new cardio doc, will > automatically pore over the 27-page sheet, once I report using this drug, so > there's no need for ME to worry..... > > > [...] > > Take care, > > RH > > Steve D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 Yes, I agree with Laurie that we should be informed, but not paranoid. Although, if I would have known about a potential for seizures from Carnitor, I would have stopped it after the first seizure I had. They don't list if the side effects occur independently either - nausea and vomiting might occur together, but many of the other ones are independent (and like Laurie says, aren't necessarily related to drug). Liver function tests are a good idea for most if not all of us on the list, but especially before starting a new drug that might affect its function. An example of a side effect I have is urticaria (hives) from penicillin. They have to list it as a side effect, but unless you're allergic, that really can't occur. On the other hand, some things are listed as " warnings " - like that Oxycontin can cause sleepiness Take care, RH > > RH > > > > My comments interspersed. > > > > > There is some caution about driving while on it, did your doctor > > > discuss that? > > > > Thanks for that point, I did find that online. My approach is to be cautious > > until I know my reaction. I routinely drive while taking (albeit small > > amounts of ) Fiorinal (contains barbiturates), for headaches. Life is > > risky...I try to be responsible. > > > > My neuro doctor doesn't discuss much of anything with me, unless I force the > > issue. I need to be pro-active and armed with all the evidence I can muster, > > in order to get him to do anything. Sort of like a lawyer preparing for > > court, I even make a list of his objections (to my requested surgery, for > > instance) with my rebuttal points. This is not to say I am trying to > > overcome reasonable reluctance on his part, but rather that he forgets the > > details of my case and I need to remind him. > > > > I've also learned (after I left that appt.) that, like for many drugs, liver > > disease is a counter-indicator for Neurontin. I have hepatic steatosis > > (fatty liver) which has probably been caused or exacerbated by my lipid > > storage disorder. Hence I'm concerned about the efficiency of my liver (i.e. > > the works may be " gummed up " or somewhat blocked). My doctor ought to know > > that I have this liver condition (I've reported it, and it's on the list of > > symptoms and test results that I gave him), but I'm sure he wouldn't > > remember it. > > > > > [...] > > > When one is treating symptoms as opposed to a disease, one has to > > > decide how bad they feel the symptom is. I would rather put up with > > > my nerve pain (which honestly is minor but a bit annoying) than start > > > to treat it. > > > > I absolutely agree. My PN has gradually worsened, and now almost always > > interferes with what little sleep I am able to get. I wish I could take this > > just at night. > > > > > Here's a link to the prescribing info: > > > http://www.pfizer.com/pfizer/download/uspi_neurontin.pdf > > > > Thanks so much for this link. When I asked CVS for the " product package > > insert " , the pharmacist gave me this funny condescending look and said that > > would be covered on their information cover sheet. When I asked " Isn't that > > just a summary of the full insert? " she brushed me off. I have to go back, > > because they have this drug listed as requiring " pre-approval " from the > > health insurer (MassHealth). I'm thinking of bringing some witnesses, and > > asking for this again. Isn't this illegal, or something, when a patient > > specifically asks for the FDA-mandated disclosure sheet? What other purpose > > does it serve, if not to inform patients? I know the " reverse- placebo " > > effect, where some people will develop mentioned side effects even on > > placebo, but that doesn't excuse not getting full disclosure from CVS. > > > > I think we all need to by hyper-aware of reported interactions and side > > effects for two reasons: > > 1) What is found to be a " rare " interaction in the general public might very > > well be common in our rare population of mito. > > 2) Doctors aren't (always) so smart. They are (all too often) in a hurry. > > They have been trained to make snap judgements. It's not THEIR lives that > > are affected. > > > > The Pfizer pdf says for Neurontin that there is some decreased activity of > > one P450 isoform, namely CYP2A6. But I'm guessing :-) that the CVS summary > > cover doesn't mention this. Suppose I KNEW I had a dysfunction in this very > > enzyme? The pdf also warns of " infrequent elevated liver function tests " . > > But I suppose all my doctors, including my new cardio doc, will > > automatically pore over the 27-page sheet, once I report using this drug, so > > there's no need for ME to worry..... > > > > > [...] > > > Take care, > > > RH > > > > Steve D. > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 Both me and my son had lingering coughs, and the allergist determined it was asthma complicated by allergies. We were on asthma medications for about 6 months, but now are off them and feel better. You guys may recall me mentioning asthma medicines. My cough was not improving from any " normal " cold treatment, but the asthma meds improved it tremendously. 'Course if you are rattling, make sure they evaluate you for pneumonia My daughter had some major breathing problems, and we took her to the emergency room. The two potential diagnoses were pneumonia and UTI, so perhaps the cough/breathing issues could relate to your UTI? Take care of yourself, don't let that cough go! Take care, RH > > RH > > > > My comments interspersed. > > > > > There is some caution about driving while on it, did your doctor > > > discuss that? > > > > Thanks for that point, I did find that online. My approach is to be cautious > > until I know my reaction. I routinely drive while taking (albeit small > > amounts of ) Fiorinal (contains barbiturates), for headaches. Life is > > risky...I try to be responsible. > > > > My neuro doctor doesn't discuss much of anything with me, unless I force the > > issue. I need to be pro-active and armed with all the evidence I can muster, > > in order to get him to do anything. Sort of like a lawyer preparing for > > court, I even make a list of his objections (to my requested surgery, for > > instance) with my rebuttal points. This is not to say I am trying to > > overcome reasonable reluctance on his part, but rather that he forgets the > > details of my case and I need to remind him. > > > > I've also learned (after I left that appt.) that, like for many drugs, liver > > disease is a counter-indicator for Neurontin. I have hepatic steatosis > > (fatty liver) which has probably been caused or exacerbated by my lipid > > storage disorder. Hence I'm concerned about the efficiency of my liver (i.e. > > the works may be " gummed up " or somewhat blocked). My doctor ought to know > > that I have this liver condition (I've reported it, and it's on the list of > > symptoms and test results that I gave him), but I'm sure he wouldn't > > remember it. > > > > > [...] > > > When one is treating symptoms as opposed to a disease, one has to > > > decide how bad they feel the symptom is. I would rather put up with > > > my nerve pain (which honestly is minor but a bit annoying) than start > > > to treat it. > > > > I absolutely agree. My PN has gradually worsened, and now almost always > > interferes with what little sleep I am able to get. I wish I could take this > > just at night. > > > > > Here's a link to the prescribing info: > > > http://www.pfizer.com/pfizer/download/uspi_neurontin.pdf > > > > Thanks so much for this link. When I asked CVS for the " product package > > insert " , the pharmacist gave me this funny condescending look and said that > > would be covered on their information cover sheet. When I asked " Isn't that > > just a summary of the full insert? " she brushed me off. I have to go back, > > because they have this drug listed as requiring " pre-approval " from the > > health insurer (MassHealth). I'm thinking of bringing some witnesses, and > > asking for this again. Isn't this illegal, or something, when a patient > > specifically asks for the FDA-mandated disclosure sheet? What other purpose > > does it serve, if not to inform patients? I know the " reverse- placebo " > > effect, where some people will develop mentioned side effects even on > > placebo, but that doesn't excuse not getting full disclosure from CVS. > > > > I think we all need to by hyper-aware of reported interactions and side > > effects for two reasons: > > 1) What is found to be a " rare " interaction in the general public might very > > well be common in our rare population of mito. > > 2) Doctors aren't (always) so smart. They are (all too often) in a hurry. > > They have been trained to make snap judgements. It's not THEIR lives that > > are affected. > > > > The Pfizer pdf says for Neurontin that there is some decreased activity of > > one P450 isoform, namely CYP2A6. But I'm guessing :-) that the CVS summary > > cover doesn't mention this. Suppose I KNEW I had a dysfunction in this very > > enzyme? The pdf also warns of " infrequent elevated liver function tests " . > > But I suppose all my doctors, including my new cardio doc, will > > automatically pore over the 27-page sheet, once I report using this drug, so > > there's no need for ME to worry..... > > > > > [...] > > > Take care, > > > RH > > > > Steve D. > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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