Multaq Anyone Else Take It (Page 12)
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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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Hi Mary R.
I am glad that Multaq is working for you. It seems lots of people in this blog swear by it - I wonder if anyone has read the warnings??
You mentioned about weight - there is an excellent book by Dr. Joel Fuhrman, MD called "EAT TO LIVE" - this book has so much good information as to what to eat if one wants to lose weight or just get the right nutrients in ones diet, I do not have a weight problem only A-Fib and some other stuff but I do refer to it quite often. My son got it for me this past Christmas and I have given a few books as a gift. It is inexpensive . Most bookstores carry it.
It is extremely difficult to follow his regimen but if you have a problem you want resolved I would think one would want to take the steps suggested.
This is just a thought. I don't consider this book as a "diet" book per se, just a book which gives so many good ideas how eat right and the right stuff to eat. Have a nice day!

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Mary, I would NEVER suggest anyone stop taking their meds without consulting their physician first. Again, I emphasize that what does or does not work for me does NOT apply to everyone - we are all different in our responses to meds. foods, supplements, exercise - virtually everything. There are meds I absolutely cannot tolerate due to their reaction on me that are perfectly safe, have low side effects, and effective for others. Others I take fine.

One thing that may come from the human genome project might be testing that will allow drug companies and physicians to be able to find patterns of genetic makeup that will aid in prescribing drugs that are safer and better for individuals based on past results with individuals with the same makeup.

Gayle, I'm just a couple of years behind you. I too found it a real struggle to break through the fatigue and get my body moving. Once I reached a certain point, it became easier to exercise than not. I still remember back to when one doctor told me to ABSOLUTELY NOT exercise, and another told me to ABSOLUTELY get all the exercise I could stand.

But pay attention to YOUR doctor you trust for advice on the exercise! I hope you have one who communicates, listens, and takes the whole person's body, mind and spirit into account.

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I would never just cold turkey stop taking anything that is controling the rythym of my heart because I did try to stop my meteprolol once and ended in full blown a fib attack. you must come off of anything slowly I think,if your system is use to it. this is just my experience maybe get a second opinion from another cardioligist.or take just half as much for a while slowly wean yourself off but it would be advisable to have a Dr.s help. I have wanted so badly to not take any medicine again but Ihave decded this small dose of multaq is helping me stay out of a fib attacks for almost 2 years with my ablation.

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Dr Cheng in houston did an ablation on me Mary Riedinger a year ago from last november and I have not had any more spells of fast heartbeat going to a fib. that would not change back to sinus rythym at all and would beat 159 beats a minute until I was put to sleep and cardio verted. He must be a very good doctor I had to wait on him to take care of an international patient that was critical .This is at st Lukes in houston. I have been safe now with no other change overs I still feel the struggle as I fall asleep but it just never changes over to afib and stops with a slight strain and a few deep breaths. I believe sleep apneia lack of oxygen is causing my very healthy unstopped up heart to struggle to get enough oxygen. I know these ar laymans terms but this is the way I can explain what happens to me. I take one half of a 50 mg real toprol (metroprolol caused back spasms tiredness but I was on more than double what I am on now.) Before ablation. I also take 2 multaq's a day and of course wafarrin 10 mg a day . but I have no side effects from this medicine that I know of. I am 350 pounds and 58 years old I believe if I lost the weight maybe I would not have had this but sometimes I see very small women my age with the same problems. So I am trying to lose my weight but at this time multaq toprol and warfarrin are my friends and thank God for Dr. Bransford in Beaumont and Dr. Cheng in Houston. He said the ablation interrupted the path my heart was taking to change over to the a fib . I have never taken any medicine regularly , Never had a surgery just 3, 9 lb babies Thank You God ,still have my tonsils , never a surgery, but I do know that this medicine is my friend .

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Most of the medicine doseages have to be tweaked by the user to be effective yet still comfortable at the same time. As far as the beta blockers and calcium channel blockers, I have never been able to take as much as prescribed and feel good. I am presently on diltiaz (Cardizem) ER and can barely stand 150mg per day. It slows me down. I do not have high blood pressure, so maybe that is a factor. I have 180mg capsules that I dampen my fingers and twist open. I usually pour out about half the granules for my AM dose and about 1/3 from another capsule for the evening (the notes say you can do this, and I have a system for marking the partial capsules for the mg remaining). I find I will work up to an overdose if I just take the 180mg per day. I also take 150mg propafenone 3 times a day. Severe headaches come on at about 4 per day, so I have to watch that dose too.

While I don't have any cardiovascular disease, I do have aortic heartblock, which is caused by electrical timing issues. My aortic valve does always open at the right time and that is not comfortable (understatement).

If I get too much diltiaz, my lower legs and feet swell too much and I will accumulate fluid in my lungs while sleeping, usually towards morning. You will know it is fluid in the lungs because it will gurgle while exhaling deeply and you can feel and hear the microbubbles popping in your lungs and windpipes. That makes it hard to sleep. So I adjust my dose down to maybe 120mg for a day and it goes away. Then i go back to 150mg if I can.

I have to keep tweaking the doseage up and down from 120 to 150 to be comfortable yet get the benefit of slowing my left atrial tachicardia (atypical A-Flutter) down near 100 from about 140-150 bpm.

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Trapper, thanks for posting! I have followed your example and I have lowered the multaq and I am doing fine. However, I was put on an aspirn and taken off wararfin (thank heavens). They would not put me on paradxa due to bleeding issues. Even tho I was on the multaq several months, I did not go back into rhythm until the cardioversion. I have been fine since. It did take 2 months to get used the the multaq.I also started taking magnesium as was suggested on this blog. I need to up my exercise, but I cannot seem to get this old 70 year old body enthused about it. I did take my treadmill down. Now to use it everyday. I have looked at Dr. M's blog and it is very good. I have tried to cut my alcohol consumption. I love a couple of glasses of wine. When I asked the doc about it, they said don't stop. However I question that! I am very happy for you, and please keep letting us know how you are doing? Gayle

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What fascinates me is the variable response people report to drug therapy. Multaq is a great example. I will say that Multaq left me less fatigued and exhausted than Sotalol and atenolol, and it's really hard to know whether or not it's what kept me initially afib free after the cardioversion until I got in better shape. Certainly by itself precardioversion, it did nothing for the afib and really slowed my heartrate, made me fatigued and "stupid" (wooden headed is how I described it to the cardiologist) and messed up my sleep.

The only way of truly knowing would be by having a Trapper clone (heaven forbid - the world's not ready for 2 of us :-)) one taking it and one not. Part of my dislike of it could have also been because the thought of taking it, along with anti-coagulants, was not how I planned to spend my life. The mind can sometimes conjure up all kinds of nasty bodily reactions to things you dislike.

I really do feel for you guys who have been through the mill with this afib stuff. I'm fortunate that a cardioversion worked, and I hope it sticks.

I think I've figured out what set me up for afib, and I've taken steps to hopefully prevent it coming back.

I really highly recommend the Dr John Mandrola blog. If you haven't found it yet, google it for some enlightening reading. Several of his latest blogs deal with rhythm control drugs, and the reasons to take and not take them. He talks a lot about fitness, anticoagulants, recent medical news and breakthroughs, and many topics about ablation procedures. He even waxes poetic about life from time to time.

I'll keep checking in from time to time to see how everyone is doing.

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Wow, that was a long "rant". This is going to be short.

Diane,

On this blog there are a lots of good write-ups, some are better than others. Come to mind are Trapper and Steve who do a lots of research and they do know what they are talking about. So it is worth reading their write-ups and take notice what they are saying.
Thanks guys!

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Hi Diane,
I am sorry to hear you don't feel so good. I believe it could be from Multaq, I am on Diltiazem 360 mg a day, 240 AM and 120 PM - I believe it is similar to Cardizem unless I am wrong - I was on Tiazac for many years and was importing it but it got to be too expensive so I was switched to the generic and so far generic is working the same. I used to be on 180 mg a day but since my gall bladder surgery when the A-FibI went chronic it had to be increased.
Therefore, I am saying it again that: "Multaq is a cousin of Amiodarone - Amiodarone can cause lung problems in the long run even years after you stop it" so as far as I am concerned both drugs are in the same family, same category - I would not touch either of these drugs with a ten foot pole.
And of course being an ex-smoker I have some lung problems - you said you have incurable lung problem so why would a Dr. put you on Multaq is beyond me.
My cardiologists as well as the electrophysiologists have said to me that this drug, Amiodarone, is as a last resort if nothing else works. (It also states that in one of the reports I found on google).
I was put on Multaq for a week in 12/2010 because EP at the time CONVINCED me cardioversion would work and it did not. Side effects were bad, fluid retention, A-Fib worse than before, headaches etc. all I got out of this conversion was a burned chest.
There is always ablation if one is interested - I am interested but could not have it done until my thyroid (TSH) levels are between 1-3. Levels are creeping up there - as I was treated with the RAI (radioactive iodine capsule over a year ago). So, I will see if at my old age I dare to go thru ablation (who knows maybe they don't ablate older folks any longer) - if I can, it will most likely be at Cornell University Hospital (Clinic) in New York City, there is an EP who does about 3-4 of them a week so he has experience. He also mentioned that since I have been in chronic A-Fib (at the time I saw him 3-2011over 3 yrs). that I might have to go thru more than one ablation. Not too inviting!!
Since my thyroid is no longer so "overactive" I have noticed my pulse rate much better and the pulse doesn't go haywire as often, it still does though - I won't be doing any marathons any time soon.
Trapper got off the Multaq and he feels so much better according to his recent notes..
Does everyone know their TSH levels, mine was 0.15-0.35 (for many years) so it made the thyroid over-active. Over-active thyroid has a lot to do with A-Fib according to my Endocro...she also mentioned that it ":might" have caused for me to get A-Fib in the first place. Now my TSH level is about 0.73 - it is worth checking into - just a simple blood test will do.
Whether in my lifetime the thyroid will become under active and I need a med it is to be seen.
Good luck to all.

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I promised to report back after a while being off Multaq, so here 'tis.

I've now been off Multaq for 6 months. No Afib, and I'm swimming up to 3/4 a mile a day. No more Multaq induced sleep cycle disturbances, fatique and weirded out problems.

Last year on Multaq, I couldn't swim half a lap without stopping and resting, catching my breathe for a while before attempting again. My best this year? 20 laps in one session in an Olympic size pool, and 30 spread over 2 sessions.

I attribute my post cardioversion success to losing nearly 70 pounds, exercising through the fatigue and a total lifestyle transformation. The Multaq may have initially helped, but it got in the way of making real progress as time progressed. I feel so much better after getting off of it. "Better Living Through Chemistry" isn't always what it's cracked up to be. If it works for you, don't pay any attention to me. We are all different in our response to meds.

The cardiologist is very happy and gave me a great report, and asked me if I was going to fire him as I seem to have done so well on my own. I laughed, and said no - it was his 200 Joules of Bi-phasic cardioversion that got me back on track a year ago. He just told me to check back in 6 months from now.

I've got my fingers crossed. Afib is a cranky disease.

Good luck to all.

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I,too have AF.After repeated trips to the hospital I finally had a electropsyological study performed which indicated I could take a medication to prevent AF instead of getting a pacemaker or defibrillator.The medication is MULTAQ.I have been on 2 tablets per day(140mg each)for 5 weeks and my heart rate and rythm are great.Only side effects I have are tiredness and some dizziness,but not too bad.I play golf 2x per week and am 77 years old.Good luck.......

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I have also had an ablation .great doctor in houston dr. cheng I had sudden onset a fib would not change back to sinus rythym without esogealshock and after myablation never have had the run away heartbeat that will not go back. only time I have a little flutter now it either does not change or changes right back I take one multaq morning and evening for a year now. I believe my problem begins when I rest and oxygen lowers and my heart is trying to compensate for the low oxygen. would like to come off the meds but scared to try as I have no a fib anymore.

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Thanks for your response, I went to a new cardiologist, she put me on Multaq in conjunction with 240 of cardizem bid, I am weaker now and feel like crap, I fret too much about my 88 y/o father with alzheimer's and his sitter situation. I went to see my FP (who is also a friend) and she walked in and told me I look like Hell...I felt better yesterday than the day before. I have aged 30 years in the past 8. I go to a different cardiologist Monday as the new one put me on the Multaq and did not want to see me for 3 months. I am seriously afraid I won't last that long. I have a rare incurable lung disease that smoking did not cause and between the 2, I am at my wits end. UVA sent me home in 2009 and told me to get my "affairs in order".

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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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Deborah: I posted a response to a similar question on the Tikosyn page at:
/Discuss/tikosyn-help-now.htm

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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.

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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.

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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.

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Have any of you been on Tikosyn and what has been your experience?

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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.

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