Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 I think this is DRONEDARONE, a deiodinated derivative of amiodarone. Still under trial and could be 2-3 years away I believe. Amiodarone A while back somebody mentioned a new version of Amiodarone which is much less toxic. Is this true, and does any one have any further information on it,and is it available in the UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 I think this is DRONEDARONE, a deiodinated derivative of amiodarone. Still under trial and could be 2-3 years away I believe. Amiodarone A while back somebody mentioned a new version of Amiodarone which is much less toxic. Is this true, and does any one have any further information on it,and is it available in the UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Bootsie: I was in a clinical trial for dronedarone (in USA). I failed to maintain NSR after just a few days but I still don't know if I was on placebo, reduced dosage or full dosage. My EP thinks there is a lot of hope for dronedarone. We believe it is approved in Europe and the UK (although I'm not 100% sure). It truly is supposed to have the effect of amiodarone without the side effects. My doc thinks it's still 2-3 years away from approval here in the U.S. > A while back somebody mentioned a new version of Amiodarone which is > much less toxic. > Is this true, and does any one have any further information on it,and > is it available in the UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Nel & Everyone: I would encourage you to ask your physician about Dofetilide/Tikosyn. He may not be aware of it inasmuch as it can only be prescribed by physicians (EPs) and hospitals who have been trained in its use - but if he doesn't know anything about it, press him to find out - or find a doctor that does. I have been on this med for over a year and a half and it has kept me in normal sinus rhythm (NSR), with absolutely no side effects. Check out our Bookmarks section: We have lots of info about Dofetilide, as well as other drugs. Click below and count down six (6) topics; then click on the word " Medications " . http://groups.yahoo.com/group/AFIBsupport/links We have seventeen (17) members who are either presently on Dofetilide or have been on Dofetilide. You might also check our Database and take a look at it: Click below and then click on the words " Dofetilide Therapy " . http://groups.yahoo.com/group/AFIBsupport/database Also, please take the time and review ' Database. There you will find the Afib history of a large percentage of our members. You might also consider adding your name to this database. http://www.dialsolutions.com/af/ This is my opinion and my opinion only: Amiodarone has just too many side effects - why take that chance when there are other drugs you could try. PS: Nell, my grandmother's name was Nellie ! I'm off to an Irish Festival in the Catkills - with lots of dancing...............talk to you all when I get back. Stay well everyone! Ellen (69 NC) (NSR on Dofetilide) ************************** ----- Original Message ----- From: Nel Weaver To: AFIBsupport (snip) I haven't heard of dofetilide (snip) Nel *************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Welcome texasladybug: So very sorry to hear about your husband's experience with Amiodarone. We have several members who have had a difficult time with this drug also; and others who have had good results. My thoughts and prayers are with you and your hubby and a warm welcome to you both. Ellen 69 NC (NSR on Dofetilide) ******************* (snip) All we were told was that it was a " nasty " drug. That was an understatement concerning the side effects that my husband has suffered from, which include: tremors, dizziness, imbalance, weakness, fatigue, change of taste and smell, tinnitus, dysphagia, hoarseness, nightmares, insomnia, sleep disturbances, delusions, hallucinations, confusion, inability to speak at times, Parkinson's- like symptoms, weight loss, ileus, muscle weakness, thyroid problems bouncing from hyper to hypo thyroidism, nausea, vomiting, nose running like a faucet etc.(snip) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 I'm not a texasladybug, but I'm a California gal........<G>.. Re: Amiodarone > Welcome texasladybug: > > So very sorry to hear about your husband's experience with > Amiodarone. We have several members who have had a difficult time > with this drug also; and others who have had good results. > > My thoughts and prayers are with you and your hubby and a warm > welcome to you both. > > Ellen 69 NC > (NSR on Dofetilide) > ******************* > > (snip) All we were told was that it was a " nasty " drug. That was an > understatement concerning the side effects that my husband has > suffered from, which include: tremors, dizziness, imbalance, > weakness, fatigue, change of taste and smell, tinnitus, dysphagia, > hoarseness, nightmares, insomnia, sleep disturbances, delusions, > hallucinations, confusion, inability to speak at times, Parkinson's- > like symptoms, weight loss, ileus, muscle weakness, thyroid problems > bouncing from hyper to hypo thyroidism, nausea, vomiting, nose > running like a faucet etc.(snip) > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Nel, i was on tambacor for about 9 yrs and had afib episodes about 4-6 times/yr. i took it in conjunction with calan which controlled the rate. i have now been on amioderone for about 6 months, not one episode of a fib--but, i do have blood work and scans every6 months to make sure there are no subtle changes. i also take a pulmonary study to check the lungs. the amio did not work right away, it takes time to build up but when it does, it's great. i am 66 and in no mood to go thru another med like dofetilide unless it is abso;lutely necessary, ie, side effects showing up or it stops working. i also would wait on ablation until the medical community felt fairly secure in a common form of ablation and the results were better than now experienced. hang in and good luck. max Thanks for responding to my message. I guess if you let it, this thing can drive you crazy. Since I first started on Tambocor, (that ran out on me), I've had this pulse beat in my ears. And at night I listen for my pulse when I go to bed, and it really keeps me awake and I start worrying. I haven't heard of dofetilide, and I don't know too much about ablation, but it doesn't sound like much fun. Thank again, it's so nice to be hearing from all the people knowing you're not alone..Nel > Nel, Amiodarone isn't the last ditch. There are other meds, better > meds, in my opinion as an ignorant layperson - such as dofetilide. > Plus there is the possibility of ablation. > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Regarding Nel's med problems, I was on Amiodarone several times, first at a low dose, then when two Cardioversions didn't work, the doctor increased the dose to 1200 a day. Had powerful side effects with that, kept falling down, it seemed my balance was way off. After five Cardioversions, my EP did a catherer ablation and pacemaker implant a week ago and everything went smoothly. I have a healthy heart so did not need to worry about anything going wrong with the procedures. Was in hospital two days and so far am feeling fine. Irene momfoz@... Re: Re: Amiodarone Nel, i was on tambacor for about 9 yrs and had afib episodes about 4-6 times/yr. i took it in conjunction with calan which controlled the rate. i have now been on amioderone for about 6 months, not one episode of a fib--but, i do have blood work and scans every6 months to make sure there are no subtle changes. i also take a pulmonary study to check the lungs. the amio did not work right away, it takes time to build up but when it does, it's great. i am 66 and in no mood to go thru another med like dofetilide unless it is abso;lutely necessary, ie, side effects showing up or it stops working. i also would wait on ablation until the medical community felt fairly secure in a common form of ablation and the results were better than now experienced. hang in and good luck. max Thanks for responding to my message. I guess if you let it, this thing can drive you crazy. Since I first started on Tambocor, (that ran out on me), I've had this pulse beat in my ears. And at night I listen for my pulse when I go to bed, and it really keeps me awake and I start worrying. I haven't heard of dofetilide, and I don't know too much about ablation, but it doesn't sound like much fun. Thank again, it's so nice to be hearing from all the people knowing you're not alone..Nel > Nel, Amiodarone isn't the last ditch. There are other meds, better > meds, in my opinion as an ignorant layperson - such as dofetilide. > Plus there is the possibility of ablation. > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Irene, 1200 mg/day is an extemely high does; i started out at 800mg and weaned down weekly to 100 mg/day. I can understand why you had the symptoms you did. sometimes its the philosophy of the ep or the cardiologist that can make or break the effects of any medication. i am glad you are okay now but you stated the reason i do not want an ablation, it oftem leads to a pacemeker if it does not work. max Regarding Nel's med problems, I was on Amiodarone several times, first at a low dose, then when two Cardioversions didn't work, the doctor increased the dose to 1200 a day. Had powerful side effects with that, kept falling down, it seemed my balance was way off. After five Cardioversions, my EP did a catherer ablation and pacemaker implant a week ago and everything went smoothly. I have a healthy heart so did not need to worry about anything going wrong with the procedures. Was in hospital two days and so far am feeling fine. Irene momfoz@... Re: Re: Amiodarone Nel, i was on tambacor for about 9 yrs and had afib episodes about 4-6 times/yr. i took it in conjunction with calan which controlled the rate. i have now been on amioderone for about 6 months, not one episode of a fib--but, i do have blood work and scans every6 months to make sure there are no subtle changes. i also take a pulmonary study to check the lungs. the amio did not work right away, it takes time to build up but when it does, it's great. i am 66 and in no mood to go thru another med like dofetilide unless it is abso;lutely necessary, ie, side effects showing up or it stops working. i also would wait on ablation until the medical community felt fairly secure in a common form of ablation and the results were better than now experienced. hang in and good luck. max Thanks for responding to my message. I guess if you let it, this thing can drive you crazy. Since I first started on Tambocor, (that ran out on me), I've had this pulse beat in my ears. And at night I listen for my pulse when I go to bed, and it really keeps me awake and I start worrying. I haven't heard of dofetilide, and I don't know too much about ablation, but it doesn't sound like much fun. Thank again, it's so nice to be hearing from all the people knowing you're not alone..Nel > Nel, Amiodarone isn't the last ditch. There are other meds, better > meds, in my opinion as an ignorant layperson - such as dofetilide. > Plus there is the possibility of ablation. > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Irene, 1200 mg/day is an extemely high does; i started out at 800mg and weaned down weekly to 100 mg/day. I can understand why you had the symptoms you did. sometimes its the philosophy of the ep or the cardiologist that can make or break the effects of any medication. i am glad you are okay now but you stated the reason i do not want an ablation, it oftem leads to a pacemeker if it does not work. max Regarding Nel's med problems, I was on Amiodarone several times, first at a low dose, then when two Cardioversions didn't work, the doctor increased the dose to 1200 a day. Had powerful side effects with that, kept falling down, it seemed my balance was way off. After five Cardioversions, my EP did a catherer ablation and pacemaker implant a week ago and everything went smoothly. I have a healthy heart so did not need to worry about anything going wrong with the procedures. Was in hospital two days and so far am feeling fine. Irene momfoz@... Re: Re: Amiodarone Nel, i was on tambacor for about 9 yrs and had afib episodes about 4-6 times/yr. i took it in conjunction with calan which controlled the rate. i have now been on amioderone for about 6 months, not one episode of a fib--but, i do have blood work and scans every6 months to make sure there are no subtle changes. i also take a pulmonary study to check the lungs. the amio did not work right away, it takes time to build up but when it does, it's great. i am 66 and in no mood to go thru another med like dofetilide unless it is abso;lutely necessary, ie, side effects showing up or it stops working. i also would wait on ablation until the medical community felt fairly secure in a common form of ablation and the results were better than now experienced. hang in and good luck. max Thanks for responding to my message. I guess if you let it, this thing can drive you crazy. Since I first started on Tambocor, (that ran out on me), I've had this pulse beat in my ears. And at night I listen for my pulse when I go to bed, and it really keeps me awake and I start worrying. I haven't heard of dofetilide, and I don't know too much about ablation, but it doesn't sound like much fun. Thank again, it's so nice to be hearing from all the people knowing you're not alone..Nel > Nel, Amiodarone isn't the last ditch. There are other meds, better > meds, in my opinion as an ignorant layperson - such as dofetilide. > Plus there is the possibility of ablation. > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Irene, 1200 mg/day is an extemely high does; i started out at 800mg and weaned down weekly to 100 mg/day. I can understand why you had the symptoms you did. sometimes its the philosophy of the ep or the cardiologist that can make or break the effects of any medication. i am glad you are okay now but you stated the reason i do not want an ablation, it oftem leads to a pacemeker if it does not work. max Regarding Nel's med problems, I was on Amiodarone several times, first at a low dose, then when two Cardioversions didn't work, the doctor increased the dose to 1200 a day. Had powerful side effects with that, kept falling down, it seemed my balance was way off. After five Cardioversions, my EP did a catherer ablation and pacemaker implant a week ago and everything went smoothly. I have a healthy heart so did not need to worry about anything going wrong with the procedures. Was in hospital two days and so far am feeling fine. Irene momfoz@... Re: Re: Amiodarone Nel, i was on tambacor for about 9 yrs and had afib episodes about 4-6 times/yr. i took it in conjunction with calan which controlled the rate. i have now been on amioderone for about 6 months, not one episode of a fib--but, i do have blood work and scans every6 months to make sure there are no subtle changes. i also take a pulmonary study to check the lungs. the amio did not work right away, it takes time to build up but when it does, it's great. i am 66 and in no mood to go thru another med like dofetilide unless it is abso;lutely necessary, ie, side effects showing up or it stops working. i also would wait on ablation until the medical community felt fairly secure in a common form of ablation and the results were better than now experienced. hang in and good luck. max Thanks for responding to my message. I guess if you let it, this thing can drive you crazy. Since I first started on Tambocor, (that ran out on me), I've had this pulse beat in my ears. And at night I listen for my pulse when I go to bed, and it really keeps me awake and I start worrying. I haven't heard of dofetilide, and I don't know too much about ablation, but it doesn't sound like much fun. Thank again, it's so nice to be hearing from all the people knowing you're not alone..Nel > Nel, Amiodarone isn't the last ditch. There are other meds, better > meds, in my opinion as an ignorant layperson - such as dofetilide. > Plus there is the possibility of ablation. > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 am glad you are okay now but you stated > the reason i do not want an ablation, it oftem leads to a pacemeker if it does > not work. max I haven't heard that before. I am not sure it is true? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 This is true if the AV node is ablated. This is your natural pacemaker. If this is gone, then you become pacemaker dependant. Dwight trudyjhagain wrote: am glad you are okay now but you stated > the reason i do not want an ablation, it oftem leads to a pacemeker if it does > not work. max I haven't heard that before. I am not sure it is true? Dwight Broeman dbroeman@... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 This is true if the AV node is ablated. This is your natural pacemaker. If this is gone, then you become pacemaker dependant. Dwight trudyjhagain wrote: am glad you are okay now but you stated > the reason i do not want an ablation, it oftem leads to a pacemeker if it does > not work. max I haven't heard that before. I am not sure it is true? Dwight Broeman dbroeman@... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 the ep at lankenau in phila told me that, i wanted to get more info on the radio frequency ablation and when we discussed that and other forms of ablation, he said-this does not always solve the problem and the potential exists that you may need a pacemaker.-that shook me up a bit.max am glad you are okay now but you stated > the reason i do not want an ablation, it oftem leads to a pacemeker if it does > not work. max I haven't heard that before. I am not sure it is true? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Guy in Iowa; My cardio lead me to believe darondarone is available now. However, I see him Thursday and I'll know for sure then. I'll let you know. Jim in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Guy in Iowa; My cardio lead me to believe darondarone is available now. However, I see him Thursday and I'll know for sure then. I'll let you know. Jim in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Nel; Yes. It's a new drug. It's supposed to be the Amiodarone without the side effects. I'm not sure if it has been approved yet. Jim in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Nel; Yes. It's a new drug. It's supposed to be the Amiodarone without the side effects. I'm not sure if it has been approved yet. Jim in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Nel; Yes. It's a new drug. It's supposed to be the Amiodarone without the side effects. I'm not sure if it has been approved yet. Jim in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 > I'm so sorry, It went this time, I guess that's what I was doing, > excuse me. I think what I wrote on the other one that did't go, I ask > if any one had been put on a HBP while on Amio...N. What's an HBP? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Guy in Iowa; Cardiologist they gave me didn't know anything about Darondarone. Meeting with rhythmnologist later this month. He will know. I'll keep you informed. Jim in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 In a message dated 8/6/2002 6:45:10 PM Central Daylight Time, ajazzmixer@... writes: > Jim in California > Thanks Jim I am about to stop taking amiodarone because of all the side effects I keep reading about. I may try dofetilide and if that doesn't work, just go for rate control. Guy in Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 is amioderone working for you, and are you regularly testing pulmonary and liver function. I have been on amio for about 10 mos, I have been tested every 6 mos. for pulmonary and liver and to date, all tests returned normal. i can see why the postings of amio can be scary--but the bottom line is whether the med is working, and not having any adverse effects. I have told my cardio to let me know the minute he sees any variation in my tests that may lead me, or him, to discontinue this med; good luck with dofetilide. > In a message dated 8/6/2002 6:45:10 PM Central > Daylight Time, > ajazzmixer@... writes: > > > > Jim in California > > > > Thanks Jim > I am about to stop taking amiodarone because of > all the side effects I keep > reading about. I may try dofetilide and if that > doesn't work, just go for > rate control. > > Guy in Iowa > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 is amioderone working for you, and are you regularly testing pulmonary and liver function. I have been on amio for about 10 mos, I have been tested every 6 mos. for pulmonary and liver and to date, all tests returned normal. i can see why the postings of amio can be scary--but the bottom line is whether the med is working, and not having any adverse effects. I have told my cardio to let me know the minute he sees any variation in my tests that may lead me, or him, to discontinue this med; good luck with dofetilide. > In a message dated 8/6/2002 6:45:10 PM Central > Daylight Time, > ajazzmixer@... writes: > > > > Jim in California > > > > Thanks Jim > I am about to stop taking amiodarone because of > all the side effects I keep > reading about. I may try dofetilide and if that > doesn't work, just go for > rate control. > > Guy in Iowa > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
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