Multaq Anyone Else Take It (Page 30) (Top voted first)

Okay 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.

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God Bless you all, here is my story:
I'm 49 female non-smoker recently diagnosed with dialted cardiomyopathy, left bundle branch block, high BP, AFIB with a EF of 45 April 3, 2012. Symptoms: I first had heart flutters not fast just a slow flutter went to my family doctor had a EKG which showed there was something wrong with my heart. I went to see a cardiologist in Northern KY who had me wear a heart monitor and take a Echo exam. I really did not think much of what was going on because we were laying people off at work and I was extremly stressed out so I figured the heart palps/flutters were normal due to anxiety. On my return visit to the cardio doctor he sat down starting reading my results and said my EF had not failing very much from 2003, that is when my left bundle branch block was first diagnosed I had been taking no medications for my left bundle branch block. He also told me I had dilated cardiomyopathy, high BP and AFIB. I sat there still not knowing what he was talking about except for the high BP, he gave me prescriptions for 4 meds and told me to look up my illness up on google online. He also said you will need to start walking and cut back on salt and I could have a beer every once in awhile. I still did not think very much of this even waited a day to have my prescriptions filled. Went and had the prescriptions filled with little care or fear.
Pharmacist said as I was driving away I hope you feel better, wow I never felt bad what was he talking about. Still I just went on cluless to what I really was diagnosed with. Then it happened I started looking up my diagnosis online....OMG what a mistake I freaked out, there is so much misleading information on the internet. I was even more streesed out thinking am I going to die will I have to go on disability what about health insurance what about my horses and dogs can I sit in the hot tub can I ride my horses? If my job finds out they may let me go next time? Well I have cried everyday since April 3 and today is the 18th. I have a full time job and I'm the director of the department. Thank God he has been with me, there are days I can barely go to work the meds made me feel tired, bloated,sick, and make my chest feel full. On top of this my ears are ringing at times like crazy keeping me up at night and making it hard for me to concentrate driving let alone performing at work. So far so good I don't think anyone at work has noticed any change in me. Personally I feel like my joy is gone. I have decided to get a second opinion my neighbor was a coreg sales rep and she insisted I go see a cardiologist she knows in Cincinnati Ohio. Well today I called and the cardiologist actaully called me back personally and made an appointment. I do not know how this will turn out and I'm very hopeful that I at least get a full explanation of what I have and if the meds are right for me or not. I suggest everyone get a second opinion if nothing else to prepare you to be able to face this head on and not have to rely on the internet for questions that nobody seems to know how to answer. I have read these posts here and there are so many questions but very few answers. I will repost after my appointment on Monday at 4:30. I wish everyone who reads this peace and grace.

These are the meds :

Multaq 400mg 2x a day
Pradaxa 75 mg 2x a day
Lisinopril 2.5 mg 1x a day
Bystolic 2.5 mg 1x a day

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Hi Deb from Cincinnati,

You seem all upset about this and no wonder, you do need a doctor who will explain these things, what you have, and what it is, how did it came about and is it easily controlled with meds, instead of you looking up these things on internet.

Multag I would not touch with a ten foot pole - that is probably making you tired and bloated - I was allergic to Lisinopril and had to stop that, right now I am taking HCTZ as a diuretic, Pradaxa is a relatively new blood thinner, at the moment I am on Coumadin.and the 4th one Bystolic I am not familiar with at all - internet mentioned it is also used for hypertension.

Good thing you are going for a second opinion - make sure you have all your questions on paper - one good idea would also be to have your friend go along, sometimes two sets of ears is better than one.

Good Luck to you. You are so young to have these sort of problems.

I have written on occasion on this blog - I will be watching your comments.

Have a good evening. An do not worry, easier said than done!! If you worry and are anxious your heart just will beat faster and faster..

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Thanks Tootsi and yes I will post my results, I see the cardiologidt thru Good Sam in CIncinnati on Monday I need to know so I can deal with and try to get my joy back. The unknown scares me so...

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Deb in Cinnci...I was shocked that the cardiologist told you to go home and look it all up on google. That is a cardiologist you DON'T want. What you should look up on google is his credentials, and the bio or rap on ANY cardiologist you see. DEFINITELY get a second opinion, and definitely research THAT physician, too. Google is only your backup to further inform yourself so that you can ask your cardiologist a lot of questions!

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You are correct I'm going to a different cardio today 4-23-2012 Amazing how a Dr. can send you home with four drugs that knock you on your butt and mess with your mind without giving a heads up
I'll post after I find the facts. Thanks so much

Deb

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Second opinions count if you are not sure and have a gut feeling that something is not right go on your instict. I had my appoitment with my second opinion cardiologist at Good Sam in Cincinnati. This doctor told me the medicine I was on bystolic was dangerous because no studies had been done on folks like me with my condition, this drug had side effects of damaging the liver. He is switching me to Coreq today. I also discovered that with the right medication I can improve on my EF and possibly eliminate some of the medications. Another major discovery I found out yesterday after my new doctor is able to read the Echo I may only have to take baby aspirin instead of pradaxa.
All this is a far cry from being told from my first cardiologist that I would be on all four drugs from my original post for the rest of my life. My new cardiologist told me my worry is not accurate I need to relax and enjoy my life. I can sit in the hot tub no more than 10 mins, ride my horses, continue to work, and live. I know the good lord had a hand in all this leading to my friend Shelly who lead me to my new cardiologist and I'm so grateful. I will post my progress as it comes. Good luck to all out there you are in my prayers.

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Good wishes to you, Deb.

If you do wish to read some more on the internet that is probably about as accurate and balanced as possible, I recommend Dr John Mandrola's blog at
drjohnm.org

By the way, he is in Louisville.

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Update
I have been on the meds now for 6 weeks, overcoming the side effects is becoming easier. I have noticed less weakness and I have lost 18 pounds which yes I needed to loose weight for sure. I have changed my diet and been exercising. I still have Afib and the doctor is upping my coreg next visit at the end of June. Good luck to all and try to have hope that was my biggest fear, what was going to happen to me. I'm able now to get my head around my condition and try to be as active as possible to deal with my condition

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Hi Deb from Cincinnati,

Thanks for your update - good luck to you!!

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Deb: My A-Fib for over 20 years (now I have occasional left atrial tachycardia from ablation scar tissue breakdown in my left atrium) and various arrhythmias for 27 years, and for the vast majority of that time took nothing but a full size aspirin a day. Only when needed to prep for a procedure or cardioversion, have i used regular strength warfain (7mg/day for me) or 300mg/day Pradaxa. I have never had a stroke or TIA event and am now 67. I am active, exercise regularly, stay hydrated and watch my diet and supplements. Nowadays, in addition to the 325 mg aspirin, I also take low dose 2.5mg/day warfarin and a Ginko Biloba supplement tab for my DIY stroke prevention. I have no cardiovascular disease so this regimen can work for me. ...not recommending this for everyone but just putting this out here.

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Your story is inspiring thanks for sharing. Episodes of Afib are scary for me. It is really strange I went to the cardio for PVCs. Now with medication I seem to have more PVCs or I'm just more attentive to my condition.
Last night I went out with friends for dinner and had an anxiety attack and could not eat. Geting older is tough but with hope and faith I can get through these trying times.

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Deb: there are lots of different conditions, no doubt, but PVCs are not what I had when in A-Fib. It is a separate arrythmia and usually not too serious unless it gets so frequent that you get faint. Usually I would only get PVCs when in normal sinus rhythm. It feels like a thud followed by a gap between beats (some people call it a missed beat), and then it starts in normal rhythm again. At least thats how mine was. Unless it is debilitating, it is usually not a serious situation. A-fib has its own signature in that it is irregularly changing irregular heart beats. A-Fib constantly changes. A-Fib runs at a slightly elevated rate, like maybe 30-40% faster than normal. but is even hard to take a pulse rate because some beats are strong and some are very weak. You need to be more frequently checking pulse because all these various arrhythmias have a different pulse rate signature. Some may be tachycardias, some A-Fib, some A-Flutter and some PVCs, and some are 'other' that might even fall into the 'sick sinus syndrome' category.
When in normal sinus rhythm I sometimes get what I call a 2-step (I it named after the Cajun and Zydego dance step) where it feels like 2 normal beats followed by a gap or skip, and it keeps on repeating. It will usually go on that way until I cough or if lying in bed, roll over on my left side. That usually ends the 2 step but earlier on in my condition would opften iniate my A-Fib - go figure! Unfortunately, we sense most all oif these arrythmias and have to learn to manage them where we can, and live with them where they are really uncomfortable. Meds have to be 'played with' to find the right levels and combos for you. And that can change over the years. There is no one size fits all. Right now I am trying two different Class Ic sodium channel blockers together (flecainide and propafenone) to try to maximize effectiveness while reducing side effects.
By the way, depression is one side effect of some of these meds, and panic attacks can be created by our minds when we have no knowledge, confidence or faith in what we are doing and are fearing for our futures. Everybody with these issues should understand that this condition requires a journey, and that there is often no quick and sure solution except for perhaps simple SVT which seems to be easily cured by right atrial ablation. We patients have to keep up to date enough to be able to know pretty much what our EPs know. And I would stay away from old-time cardiologists, because the only some of them know are cures are clogged arteries and installation of pacemakers (which I am trying to delay as long as possible, but the need for delaying pacemaker installation is another story).

It should go without saying, but I will say it anyway for those that may be uninformed - if you are looking here at this websire, you need to avoid caffeine most commonly found in coffee and soft drinks, avoid decongestants of any type, and avoid MSG. Avoid lidocane and some other drugs. And obviously we want to avoid stimulants such as various forms of meth, to avoid terminal cardiac arrest.

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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!

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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!

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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!

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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.

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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.

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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.

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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.

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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.

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