Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Steve I'm not trying to discourage you from researching any med you are given, because we need to be our own advocates. I just wanted to point out that all side effects might not even be a side effect. They have to list everything, even if it is only one person and that other things could have caused it. I have experienced this first hand. My assumed side effect was listed on a drug, even though it might have been caused by lots of other things. My personal policy is to read the side affects list, but not the rare ones and then re-read them all if I am having problems. I also take longer to ramp up on a med., increasing every week instead of every few days. I would suggest having a base-line liver function test done before starting on it. This is usually done for all anti-convulsants. laurie > 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 5, 2005 Report Share Posted September 5, 2005 If it has a " long list " , I call and leave a message for my pharmacisto call me at his convenience and why I am asking him to call. He is very, very good to watch contradictions or any kind of possible problematic side effects. I feel very fortunae that he is that caring. Not too much to say as I am coughing approx 13 out of every 24 hours, plus I found out Frifday that (of all things) I have a bladder infection?? I see my PCP tomorrow and my Urologist said he was going to send her a fax about my rattling lungs and te bladder infection. Take care, Dolores Laurie Fitzgerald laurie.fitzgerald@...> wrote:Steve I'm not trying to discourage you from researching any med you are given, because we need to be our own advocates. I just wanted to point out that all side effects might not even be a side effect. They have to list everything, even if it is only one person and that other things could have caused it. I have experienced this first hand. My assumed side effect was listed on a drug, even though it might have been caused by lots of other things. My personal policy is to read the side affects list, but not the rare ones and then re-read them all if I am having problems. I also take longer to ramp up on a med., increasing every week instead of every few days. I would suggest having a base-line liver function test done before starting on it. This is usually done for all anti-convulsants. laurie > 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 I do have COPD so it makes it difficult to figure out at times, I am so glad for my Nebulizer as It does help some and I also use a Spirvia inhaler once daily. There is asthma in my family and my 52 year old son is asthmatic, they said I many old scars on my lungs and that there is signifacant new scarring after these last two bouts of back to back pneumonia, usually I just get " walking pneumonia " but both times it was flow blown pneumonia. My current cardiologist has make some significant findings concerning my swelling and the new medication he put me on now is helpinr my kidneys to do a better job and now I am getting rid of the fluid thru my kidneys something about " insipidus " at any rate I now can see my ankles, I have veins in my feet and can get my wedding rings on. He started looking after I gained five pounds oveigh when I was in the hospital. It appears that I have some kind of metabolic problem to do with an antidieuretic hormone (I think I have it part way right)? He had me get a creatine (sp) test done today as well as some kind of a " panel " I guess I'll know more on friday when I see him again but it sure is great to b able to get shoes on and my clother to fasten around my middle. Thanks Dolores ohgminion rakshasis@...> wrote: 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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