Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 > Hello, all. My electrophysiologist is proposing to put me on Tykosin > instead of Diltiazem. I go in and out of afib constantly,...I don¹t have the impression that Toprol or Cardizem have > had any effect on the frequency of my afib episodes, so I figure I might be > just as well off without drugs except, of course, Coumadin. Kathleen, I don't know why your doc prefers tikosyn to other possible meds, but some people here have had great success with it, like Ellen. Toprol and Cardizem (which I think is a calcium channel blocker?) are less effective in keeping people out of afib than the more serious meds, but are safer, so it's kind of like comparing apples and oranges. I don't like taking meds either, so it's basically a question of how much the afib bothers you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 > Hello, all. My electrophysiologist is proposing to put me on Tykosin > instead of Diltiazem. I go in and out of afib constantly,...I don¹t have the impression that Toprol or Cardizem have > had any effect on the frequency of my afib episodes, so I figure I might be > just as well off without drugs except, of course, Coumadin. Kathleen, I don't know why your doc prefers tikosyn to other possible meds, but some people here have had great success with it, like Ellen. Toprol and Cardizem (which I think is a calcium channel blocker?) are less effective in keeping people out of afib than the more serious meds, but are safer, so it's kind of like comparing apples and oranges. I don't like taking meds either, so it's basically a question of how much the afib bothers you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 > Hello, all. My electrophysiologist is proposing to put me on Tykosin > instead of Diltiazem. I go in and out of afib constantly,...I don¹t have the impression that Toprol or Cardizem have > had any effect on the frequency of my afib episodes, so I figure I might be > just as well off without drugs except, of course, Coumadin. Kathleen, I don't know why your doc prefers tikosyn to other possible meds, but some people here have had great success with it, like Ellen. Toprol and Cardizem (which I think is a calcium channel blocker?) are less effective in keeping people out of afib than the more serious meds, but are safer, so it's kind of like comparing apples and oranges. I don't like taking meds either, so it's basically a question of how much the afib bothers you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Kathleen wrote: <<My question to the list is whether or not it seems reasonable for me to resist drug therapy (except for Coumadin) altogether.>> The AFFIRM trial had one very significant limitation, which was it excluded any patient for whom stand alone rate control therapy was not a reasonable choice. Thus the conclusion that there was no difference in outcome between those on rhythm control and rate control is applicable only to the group they selected. Most of the patients in both groups were anti-coagulated. They did not set up a group that was on both rate and rhythm control, which would have been interesting to me. Rate control is almost always prescribed along with rhythm control in clinical practice. Further, the longest they followed any patient was 4 years, with most followed for less than that time period, which is not that long. If you go in and out of AFib constantly, you sound like you might not have been selected for AFFIRM because the time of greatest danger for stroke is when you are returning from AFib to NSR, especially after being in AFib for 48 hours or longer. I'm speculating here that they would have wanted patients who were more stable. But that is speculation. I bring all this up because I've listened to experts who say too many of us lay people interpret AFFIRM as meaning more than it does. Then there is the issue of " quality of life " as in, does AF affect your ability to drive, have fun, work, lightheadedness, postural hypotension, etc. ?? My bet is Tykosin would make a big difference in the number of times you go into AF, as in perhaps many months between episodes. And the episodes themselves could be much briefer and less symptomatic. The question of why bypass the first line drugs stated in the guidelines is certainly a good one and I would like to know the response, if you care to share it after you get it. Tykosin blood levels are in good part a response to how the kidneys process it, and the difference between a helpful and harmful blood level is apparently small enough that they hospitalize anyone going on the drug, or even changing doses, so they can check exactly how YOUR kidneys handle it. Plus the prescriber must have been specially certified to handle the situation. To maintain tight control over its use, Tykosin is available from only one pharmacy in the US, one that apparently has a list of every doc who is authorized to prescribe it. I would not call these " red flags " but I would certainly ask the doc what is the worst thing that ever happened to a patient taking it in his or her clinical experience. And so on. For myself, if I were in and out of NSR as much as you are, I would not resist drug therapy in general. I would probably resist Tykosin as the starting point. Guidelines get to be guidelines for good reason, usually, and these are all potent drugs. - OU alum in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Kathleen wrote: <<My question to the list is whether or not it seems reasonable for me to resist drug therapy (except for Coumadin) altogether.>> The AFFIRM trial had one very significant limitation, which was it excluded any patient for whom stand alone rate control therapy was not a reasonable choice. Thus the conclusion that there was no difference in outcome between those on rhythm control and rate control is applicable only to the group they selected. Most of the patients in both groups were anti-coagulated. They did not set up a group that was on both rate and rhythm control, which would have been interesting to me. Rate control is almost always prescribed along with rhythm control in clinical practice. Further, the longest they followed any patient was 4 years, with most followed for less than that time period, which is not that long. If you go in and out of AFib constantly, you sound like you might not have been selected for AFFIRM because the time of greatest danger for stroke is when you are returning from AFib to NSR, especially after being in AFib for 48 hours or longer. I'm speculating here that they would have wanted patients who were more stable. But that is speculation. I bring all this up because I've listened to experts who say too many of us lay people interpret AFFIRM as meaning more than it does. Then there is the issue of " quality of life " as in, does AF affect your ability to drive, have fun, work, lightheadedness, postural hypotension, etc. ?? My bet is Tykosin would make a big difference in the number of times you go into AF, as in perhaps many months between episodes. And the episodes themselves could be much briefer and less symptomatic. The question of why bypass the first line drugs stated in the guidelines is certainly a good one and I would like to know the response, if you care to share it after you get it. Tykosin blood levels are in good part a response to how the kidneys process it, and the difference between a helpful and harmful blood level is apparently small enough that they hospitalize anyone going on the drug, or even changing doses, so they can check exactly how YOUR kidneys handle it. Plus the prescriber must have been specially certified to handle the situation. To maintain tight control over its use, Tykosin is available from only one pharmacy in the US, one that apparently has a list of every doc who is authorized to prescribe it. I would not call these " red flags " but I would certainly ask the doc what is the worst thing that ever happened to a patient taking it in his or her clinical experience. And so on. For myself, if I were in and out of NSR as much as you are, I would not resist drug therapy in general. I would probably resist Tykosin as the starting point. Guidelines get to be guidelines for good reason, usually, and these are all potent drugs. - OU alum in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Kathleen wrote: <<My question to the list is whether or not it seems reasonable for me to resist drug therapy (except for Coumadin) altogether.>> The AFFIRM trial had one very significant limitation, which was it excluded any patient for whom stand alone rate control therapy was not a reasonable choice. Thus the conclusion that there was no difference in outcome between those on rhythm control and rate control is applicable only to the group they selected. Most of the patients in both groups were anti-coagulated. They did not set up a group that was on both rate and rhythm control, which would have been interesting to me. Rate control is almost always prescribed along with rhythm control in clinical practice. Further, the longest they followed any patient was 4 years, with most followed for less than that time period, which is not that long. If you go in and out of AFib constantly, you sound like you might not have been selected for AFFIRM because the time of greatest danger for stroke is when you are returning from AFib to NSR, especially after being in AFib for 48 hours or longer. I'm speculating here that they would have wanted patients who were more stable. But that is speculation. I bring all this up because I've listened to experts who say too many of us lay people interpret AFFIRM as meaning more than it does. Then there is the issue of " quality of life " as in, does AF affect your ability to drive, have fun, work, lightheadedness, postural hypotension, etc. ?? My bet is Tykosin would make a big difference in the number of times you go into AF, as in perhaps many months between episodes. And the episodes themselves could be much briefer and less symptomatic. The question of why bypass the first line drugs stated in the guidelines is certainly a good one and I would like to know the response, if you care to share it after you get it. Tykosin blood levels are in good part a response to how the kidneys process it, and the difference between a helpful and harmful blood level is apparently small enough that they hospitalize anyone going on the drug, or even changing doses, so they can check exactly how YOUR kidneys handle it. Plus the prescriber must have been specially certified to handle the situation. To maintain tight control over its use, Tykosin is available from only one pharmacy in the US, one that apparently has a list of every doc who is authorized to prescribe it. I would not call these " red flags " but I would certainly ask the doc what is the worst thing that ever happened to a patient taking it in his or her clinical experience. And so on. For myself, if I were in and out of NSR as much as you are, I would not resist drug therapy in general. I would probably resist Tykosin as the starting point. Guidelines get to be guidelines for good reason, usually, and these are all potent drugs. - OU alum in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Kathleen - I was on diltiazim for a couple years and then switched to Tykosin after a very long afib episode complicated by a stomach illness... and all I can say is that so far so good! I take 250 x 3 Tykosin and 50 mg atenelol and I'm right as rain! I have zero side effects, other than NSR, and I have gobs of energy.. really .. I notice nothing from these drugs (take coumadin too, of course). My heart rate stays very low... usually around 50, and my blood pressure is usually around 90/50.. sometimes 110/70 if I'm doing a " cardio " workout! Sotolol (betapace) was the most horrible drug I ever experienced... like someone pulling the plug on my life.. I was dead tired all the time, felt pukey, sobby.. I was really a mess.. My pop takes Tambocor and also has a huge problem with his energy level, and is trying to switch. When I was first twitched to Tikosyn my heart was kinda " jumpy " .. I'd have little runs of afib.. short enough that by the time I put my hand to my wrist or neck, it was gone.. I thought that was the tikosyn, but it may have just been remnant from being in afib for 6 weeks straight... now, 4 months later, I hardly ever have any " runs " like that... I can't remember the last time! Anyway.. just my opinion, but Tykosin is a good thing.. it's definitely got it's side effects, as do most heart drugs, but I love that it doesn't affect my life and being in any negative way! p.s. you have to be hospitalized for at least 3 days while starting this drug... please do not allow yourself to be put on it without 24 hour care just steps away... not that your EP would do this, of course.. just making note. Kathleen Stept wrote: Hello, all. My electrophysiologist is proposing to put me on Tykosin instead of Diltiazem. I go in and out of afib constantly, Sometimes have a day or two in normal rhythm, but I am not sure I want to try any more drugs. I don¹t know why we would bypass the ³first-line² antiarrythmics (Tambocor, Rythmol, Betapace), but I will certainly ask. My question to the list is whether or not it seems reasonable for me to resist drug therapy (except for Coumadin) altogether. (This is not to say that I want to go the surgical route right now.) I don¹t have the impression that Toprol or Cardizem have had any effect on the frequency of my afib episodes, so I figure I might be just as well off without drugs except, of course, Coumadin. Many thanks for your thoughts. -- Kathleen Stept (Diltiazem 120 mg, Coumadin 5mg, Magnesium Oxide 400mg) , MS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Kathleen - I was on diltiazim for a couple years and then switched to Tykosin after a very long afib episode complicated by a stomach illness... and all I can say is that so far so good! I take 250 x 3 Tykosin and 50 mg atenelol and I'm right as rain! I have zero side effects, other than NSR, and I have gobs of energy.. really .. I notice nothing from these drugs (take coumadin too, of course). My heart rate stays very low... usually around 50, and my blood pressure is usually around 90/50.. sometimes 110/70 if I'm doing a " cardio " workout! Sotolol (betapace) was the most horrible drug I ever experienced... like someone pulling the plug on my life.. I was dead tired all the time, felt pukey, sobby.. I was really a mess.. My pop takes Tambocor and also has a huge problem with his energy level, and is trying to switch. When I was first twitched to Tikosyn my heart was kinda " jumpy " .. I'd have little runs of afib.. short enough that by the time I put my hand to my wrist or neck, it was gone.. I thought that was the tikosyn, but it may have just been remnant from being in afib for 6 weeks straight... now, 4 months later, I hardly ever have any " runs " like that... I can't remember the last time! Anyway.. just my opinion, but Tykosin is a good thing.. it's definitely got it's side effects, as do most heart drugs, but I love that it doesn't affect my life and being in any negative way! p.s. you have to be hospitalized for at least 3 days while starting this drug... please do not allow yourself to be put on it without 24 hour care just steps away... not that your EP would do this, of course.. just making note. Kathleen Stept wrote: Hello, all. My electrophysiologist is proposing to put me on Tykosin instead of Diltiazem. I go in and out of afib constantly, Sometimes have a day or two in normal rhythm, but I am not sure I want to try any more drugs. I don¹t know why we would bypass the ³first-line² antiarrythmics (Tambocor, Rythmol, Betapace), but I will certainly ask. My question to the list is whether or not it seems reasonable for me to resist drug therapy (except for Coumadin) altogether. (This is not to say that I want to go the surgical route right now.) I don¹t have the impression that Toprol or Cardizem have had any effect on the frequency of my afib episodes, so I figure I might be just as well off without drugs except, of course, Coumadin. Many thanks for your thoughts. -- Kathleen Stept (Diltiazem 120 mg, Coumadin 5mg, Magnesium Oxide 400mg) , MS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 > Hello, all. My electrophysiologist is proposing to put me on Tykosin > instead of Diltiazem. I go in and out of afib constantly, Sometimes have a > day or two in normal rhythm, but I am not sure I want to try any more drugs. > I don¹t know why we would bypass the ³first-line² antiarrythmics (Tambocor, > Rythmol, Betapace), but I will certainly ask. My question to the list is > whether or not it seems reasonable for me to resist drug therapy (except for > Coumadin) altogether. (This is not to say that I want to go the surgical > route right now.) I don¹t have the impression that Toprol or Cardizem have > had any effect on the frequency of my afib episodes, so I figure I might be > just as well off without drugs except, of course, Coumadin. Many thanks for > your thoughts. > -- > Kathleen Stept (Diltiazem 120 mg, Coumadin 5mg, Magnesium Oxide 400mg) > , MS > There are people living with rate-controlled afib. After being in chronic (24/7) afib for over 6 weeks earlier this year I could *almost* understand that one could live with it. It wasn't *that* bad, being rate-controlled (thanks to toprol). So it boiled down to the old " risk-benefit-just how bad do I feel this way? " decision. I decided that if a stronger med could keep me in nsr I was willing to try it. I did, it has and I feel much better. Also, I would think that you would still have to take toprol even if you decided not to take diltiazem or tikosyn, to keep your rate down...? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.