Multaq Anyone Else Take It (Page 30)
UpdatedOkay I will start off by saying this drug scares me because it has not been out for very long. I have Afrial Fib which is not behaving I can be 70 beats one min and regular and the next I will be at 190 and in atrial fib and flutter. this is my last chance at a med I have tried all the others I usually end up in the ER two or three times a week. I have had one ablation so far. If anyone else takes it please let me know what it is like. I am starting it on Tuesday.
Thanks Steve you are very knowledgable and it is much appreciated. I have cut out all caffiiene, salt, carbs and really wattch what I eat. I did drink two beers the other night at a benefit. Doctor said I could have a couple every now and then. As far as illegal drugs I totally agree that would be a no no for us heart patients.
Last night I ran into a hear a heart patient who shares my new cardio doc. He told me he worried for about the first two years and then got over it and learned how to deal with it. He is now 15 years into his condition nd having a blast in everything he does. He also assured me the heart doctor we have at Good Sam in Cincinnati is one of the best in a 600 mile radius, amazing how some information can go a long way and help your mind. It was so refreshing speaking to him I wish we had in person heart support groups in Cincinnati. I also appreciate this site, this is real people in real time. I had be scanning the internet like a wild person and there is so much negative out there alot of it dayed in 2009 and no new news on the complainers it makes me wonder why. God bless.
Hi, I have been taking Multaq 2 x day for about 12 - 18 months. It didn't seem to help much until about the time I switched from metformin to Januvia, then my Afib seemed to all but disappear. I recently had to stop the Januvia and went back on the metformin, which seemed to cause a few momentary irregular heartbeats. I get short of breath very easily. Granted, I am obese, but I believe this is more from the Multaq and I would like to stop taking it. I guess my question is how should I decrease the dosage and what length of time should I expect to get off of it. If anyone else has experience with discontinuing Multaq, I would like to get your opinions. Thanks so much!
Hi Peggy, I have been tapering off Multaq for the past 3 months, after being on the same dosage and length of time you were. Now I'm down to 1/4 tablet 2x day, and if anything my episodes are less than they were when I was on the full dose. In my case, I believe Multaq made my afib worse. When I told the electrophysiologist I'd like to get off the drug, he suggested cutting back to 1/2. That didn't work well at all, so I went to 3/4 for about a month and then decreased it to 5/8, 1/2, 3/8, then 1/4, staying on each dosage for at least 2 weeks. The afib acted up each time I cut back but after about 3 days it subsided. It is a challenge to cut the pills, but I feel much better now. Good luck!
Hi Joan,
Thank you so much for your quick reply! I hate this medicine! I have felt generally worse since I started taking it (and everything else they tried me on first) than the afib makes me feel. The afib that I have had generally lasts for only a few moments at a time, not hours or days, but also can occur frequently. I "accidently" forgot to take my pm dose yesterday and lived through the night. lol What happened with you when you first went to the 1/2 pill twice daily, if you don't mind me asking? I am glad to hear you are doing so well with tapering off. That gives me much encouragement. Thank you!
Peggy, when I first cut back to 1/2 dose it was as if I didn't take any at all. The afib came on so strongly my chest hurt. My fibs typically last 1-2 hours, never days, and occur when I least expect them. Lately, though, they occur much less frequently (maybe once a week, and are milder) so I can tolerate it. My goal is to get off Multaq and any other anti-arrhythmic drug completely. I'm also seeing a Naturopath and am getting chelation therapy to remove heavy metals because a test showed I was high in lead, cadmium and mercury, which could affect the heart-- not to mention the rest of the body. Last summer I started taking 500 mg. of Magnesium a day and that made a difference right away. Hope this helps.
Thanks so much Joan. I desperately want to get off of Multaq. I have not taken it for the last two nights, only the am doses, and have noticed no increase in my afib. I have had some momentary fluttery feelings in my chest, but nothing more than I had already. So far so good. If I do start to have more, I will go back to a half of a pill in the evenings, but I hope I don't have to. I do want to start taking the magnesium, because I get very little from the foods I eat. I also think my afib does better when I drink more water, as I typically do not drink much of any kind of liquids, so I think I tend to get dehydrated and that makes the afib worse as well. We will see how this all goes.
Peggy: You should drink plenty of water to stay fully hydrated at all times, especially if prone to A-Fib and other arrythmias, because dehydration increases risk of stroke. You didn;t say how old you are, but dehydration increases in older people because we gradually lose our sense of thirst as we age. So the risk of dehydration and stroke increase as we age.
To quickly stop palpitations, it can be helpful to quickly cough hard a few times (I call them tympany). It stimulates the vagus nerve and can often end tympany if you cough quickly. It has become second nature for me now. Once in a while one will continue and I am off onto a spell of arrythmia. My triggers seem to be caffeine, decongestants and MSG. I take extra extra magnesium with my calcium, potassium, either my prescription or low sodium V8 juice It. has 1180mg of potassium per 12oz (season with No-Salt or Low-Salt, pepper, hot sauce and maybe worcestershire sauce to taste.
I was on Multaq for 2 years. It's a brutal drug and didn't seem to slow down my AF. I had ablation done in Sept. 2011 which put me into AF pretty well 24/7. The hospital wanted me to get cardioverted constantly, that was ridiculous after awhile and very exhausting. The cardioversions would only last me for 48 hours and then I'd be back into AF. I had my second ablation done in Jan. 2012, just over 3 months after my first one and I'm so happy to say I've been in sinus rhythm ever since. After my second ablation they took me off Multaq and onto Flecainide. I'm now off Flecainide, just still on a 5 mg. beta blocker and 110 mg. Pradaxa twice daily. I go back for my checkup early July and will hopefully be taken off the blood thinner. Hang in everyone, I think there is hope out there. Having had AF for 5 years really badly, it's such a relief to be in sinus rhythm all the time. I have not been allowed any caffeine, chocolate or alcohol since my ablations, feeling fairly pure these days, but looking forward to a glass of wine once I get off the blood thinner, if the doctor says okay. Good luck everyone, I would be very wary of Multaq, it's had some bad press up here in Canada.
Check out the Pallas study on Multaq (dronedarone):
fda.gov/Drugs/DrugSafety/ucm264059.htm
and
nejm.org/doi/full/10.1056/NEJMoa1109867
and
internalmedicinenews.com/news/cardiology/single-article/pallas-trial-demotes-dronedarone-for-atrial-fibrillation/4b1b767cc8.html
and
forbes.com/sites/larryhusten/2011/11/14/pallas-poor-results-for-dronedarone-in-permanent-af/
etc.
All that said, the Pallas study was on more elderly Americans. That said, I have a friend on Multaq and it works well for her. She really likes it. But my EP is now reluctant to prescribe it because of the Pallas study. I had a serious thyroid blowup with amiodarone (a cousin of Multaq/dronedarone) about 11 years ago, so I am reluctant to try Multaq too. Tikosyn (dofetilide, which is considered to be more effective than dronedarone) did not work at all for me at either doseage, so he is probably right in my case.
For someone younger and with less ablation damage than me, it might be worth a shot, but be sure to have regular tests because a lot of different things went seriously wrong for a drug that was supposed to be safe, although in relatively few people. My guess is they are being quite cautious now because they do not know what the risk factors are for people taking Multaq. It might take years and a lot of studies before the risk factor is known.
Thanks everyone for your input on this. Steve, I am 55, and I know that drinking only a cup or two of water a day is totally crazy and not nearly enough, so I am trying hard to drink more. I have been like that my whole life so it is hard to make myself drink more, but I know it is in my best interests. I have noticed the coughing helps with my afib. Luckily I am having very few problems with it right now. I believe that mine was brought on by stress and trauma since it developed just a few months after losing both parents within a few months of each other. I have not taken my evening dose for three days, and today I decided not to take my morning dose either. So far so good. I will see how it goes. Does anyone know how long it takes for the Multaq to be completely out of your system?
standard answer is that Multaq half-life is 24 hours, so most doctors would say it takes 5 days to clear. But it could take longer, as different people metabolize at different rates.
BTW, studies have shown that staying fully hydrated increases metabolic rate near 100 calories per day over what the average person drinks. Here in America where we are all well fed, the results of drinking more water can be significant over the long haul.
Hello all
I discovered something very interesting yesterday my doc put me on prednisone 10 mg for a aching right shoulder. I discovered the on off bouts I was having with PVCs and Afib are gone so far since I took my first prednisone pill. I am on Multaq,Pradaxa,Coreg twice a day. I take a BP pill at night lisinopril 2.5 mg. Anyone else experience this while on prednisone?
Deb: This is JMHO, but my guess is the prednisone probably relaxes you. During the many years I was in and out of A-Fib, I often thought maybe an anti-anxiety drug would help but never sought that prescription. My A-Fib attacks caused anxiety attacks and vice versa. It was hard to separate the two....
Alan, I have been in intermittent A-Fib for 8 years now, I think it began when a surgeion tried to put in a central line when I had a spontaneous pneumothorax. I think he nicked my heart, can't prove it tho. I have been taking diltiazem 240 up to 6 x a day to try to convert for days. I went to a different cardiologist and she ordered multaq 400 bid with meals. After reading all the info. about it, I would like to go to the 1 400 mg, daily. What do you think? I have a rare terminal lung disease but have lived for the past 3 years with it.
Have any of you been on Tikosyn and what has been your experience?
Dianne: Are you seeing a Cardiologist or an EP for this? Your prescription seems strange. 240mg x 6/day is a huge amount of Diltiaz. I would be on the floor with that. About all I can stand is 180 or maybe 240 on a good day. I do take 150mg x 3 of propafenone/day in addition to the cardizem, and can only stand up to about 4x/day of the propafenone before headache sets in. I have normal blood pressure. It is strange you are not taking an anti-ahrrythmic along with the calcium channel blocker. They work better together, and you probably would not need near as much cardizem. If I really want to slow it down when in a faster ahrrythmia, I add some digoxin to the mix but it takes up to 3 days to finally get my heart rate down into the 70s where it can convert. Stimulants like caffeine and decongestants are a problem. Some of the common inhalers for lung problems are also powerful stimulants, so maybe that is adds to your problem. You might want to get a second opinion on your meds from a different cardioligost or preferably an electrophysiologist. This is JMHO.
Hi Deb from Cincinnati,
Yes, you feel like a million bucks when taking prednisone, its seems all aches and pains disappear. It is a phenomenal drug. I was on it several times during fall of 2009 for pneumonia and after effects of it.
It is not a drug to be on for too long as it knocks down your immune system. How is your shoulder doing?? is the pain almost gone??
Hope you won't have to take it for too long.
Take care.
My mom, age 80, started taking it about 6 months ago after trying everything else. She also has afib and had been in & out of hospital multiple times. She has had good results, no incidents with afib since then, and doesn't recall negative side effects.
Deborah: I posted a response to a similar question on the Tikosyn page at:
/Discuss/tikosyn-help-now.htm
Only took it for a week 3 for 3 days 2 for 3 days and then 1 for 3 days. Yes my shoulder feels much better there is something to be said for the no afib while on it. I know it has side effects but I was not on it long enough to feel any problems other than great,
Deb
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