Multaq Anyone Else Take It (Page 25)

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 Gary, and thanks for your reasoned responses. As this is a forum specific to Multaq, I don't want to get into a long discussion about medicine in general, but you've hit the nail on the head.

For this thread, here are my problems with the combination of Multaq and Pradaxa.

Extreme fatigue - poor concentartion and memory. I'm having real problems at my job.
Poor sleep patterns and short length of sleep.
Bad indigestion, heartburn, bloating and gas. This is the pits for me, as my afib troubles started in response to vagal stimuli due to stomach problems, so I'm afraid it will be kind of self perpetuating.
Bleeding sores, bruises, blood blisters and bleeding gums
My BP can fall as low as 94/55 and a pulse rate of 40 with resultant dizzy spells and lightheadedness. Some says I'm afraid to drive.

Interestingly, several days ago I came across this tidbit:

"A study conducted by Sanofi indicated that patients taking Multaq and Pradaxa may be exposed to higher than intended amounts of Pradaxa, which may be increased by 1.7 to 2-fold (doubled).

This might expalin my bad skin and bleeding problems. No comment from any of my doctors. My belief is that anti-coagulants are vastly overused anyway, especially in low risk patients. The adverse effects can easily outweigh the potential benefits if you REALLY study the statistics yourself and check around you for the anecdotal evidence."

Joint pain, but I cannot take NSAIDs anymore, due to the Pradaxa and aspirin.


So my conversations and visits to doctors this week garnered these helpful things.

"keep doing what you are doing, as your rhythm is great AND

we can give you a prescription for sleeping pills, a powerful PII for your stomach, and some celebrex for your joint pain you can take once a week."

Yeah, great - let's do polypharmacy and keep on taking pills to counteract other pills. Yummy. Anybody else see anything wrong with that combo of meds?

Knowing what I know now, I would never have mentioned at a routine physical that I occasionally experienced a flutter when I had indigestion. I also know what started the whole thing, and how I could have fixed it myself without spending thousands of dollars and having endless hospital procedures and spending more on drugs per month than my mortgage. I felt great until they started experimenting on me with many different classes of meds. Now I feel like I'm 90 years old. People ask me all the time what's wrong with me . . .what happened?

A tip for others. If you ever start losing weight with the resulting fluid loss, load up on potassium. Also if you ever consumed alcohol regularly, have your magnesium levels checked. INSIST on it before you are started down the road to afib med hell.

So why don't I just quit taking the meds? according to some experts, once you are on them, you cannot quit - EVER - due to the rebound effect, which again can be worse than what you were originally were being "treated" for. I want to find a way to get off them safely.

Yes, I'm bitter . . . . . .

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Sorry about the typos. My brain doesn't function well these days.

Oh, did I forget to also mention the vison problems?

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Trapper, just read your post to Gary. I think a lot of your problem might be the paradaxa. I asked my doc about paradaxa and they said if you have an accident where you were bleeding they may not be able to stop it. Therefore, they kept me on the warafin, and there is more of a possibility of controlling bleeding with that drug. I had side effects, but not as bad as yours. I was on 5 mg a day. For my stomach, I took prilosec, I eat an activia yougart everyday and I take gasx and tums. Also take some of the supplements they recommend here. I do agree with other folks here that if your doc is not listening to you, you need to find another one. Take care.

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Gayle, thanks. I refuse to take coumadin - I've seen the results first hand, and it ain't pretty. The only reason I agreed to go on Pradaxa was it was intended originally for me to be using it only for a few weeks, and the risk of hemorrhagic stroke was less than coumadin. I definitely agree that the Pradaxa is responsible for the GI distress and the bleeds, especially at the plasma concentration levelsthe Multaq can cause. I do take it with meals, but also recently read you should take Multaq 2 hours apart from the Pradaxa, but both should be taken at the morning and evening meals, hmmm. Also, the only other med I'm on for something different I cannot take with aspirin, which shouldn't be taken at the same time as the Pradaxa. but also with a meal, but also with food. Hmmm. Gonna be a lot of calories consumed. :-)

I'm working on some changes . . . . . .

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Trapper, Wow, my doc told me with the paradaxa it is much more difficult to stop bleeding should you get in a accident or were bleeding internally. I asked them for it last year, as I heard it did not have any side effects and that is what they told me in regard to it. I go to an Afib specialist at the University of California and they see me every 4 to 6 months unless I have problems. As I told you I am now on aspirin everyday (325mg) and am off the coumadin.
I hope you continue to follow up and they find a good regimen for you.

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well said gary

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my hair was falling debbie and doc put me on pilopetan plus minoxidil think ive spelt it right your spray this on your scalp and really worked the pilopeptan are all the vit b you can name in one pil skin and hair much better now

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trapper
i found the multaq to be very effective with the afib and i could breathe again but had all the other problems ie gi tract and liver ive had cat scan mri scan 7 blood tests now cameran down throat for a scan inside the bile duct all this started from the 2nd day i started the multaq but i felt great with my heart but if you have never been on antiarrythmic drugs before i suggest you change to dilatazem or apocard these are good but i was on them to long so my body got used to them already had one abalation and they wanted to do another but i said no so they tried the multaq i wish i had never gone on this drug it was leathal to me even though the docs say this isnt the problem i know it is

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I am 66 male and have been a healthy A-Fibber since about 42. It runs in all the males on my father's side. I had ablations in 2001 and 2002 and Atricure mini-maze surgery and atrial appendage ligation in 2006. They ablations helped but did not cure. The mini-maze cured me for 4 years with no meds except for occasional PVCs. Tried beta blockers, digoxin, and amiodarone (went hyperthyroid), then flecainide. After 4 years cured taking no meds, I am having spells of atypical A-flutter that my EPs believe is initiated in my left atrium. My present EP is afraid of flecainide risk, and am taking propafenone but do not like all the side effects, especially the exercise limiting. My choices are now Multaq, Tiksyn, left atrium cryo-ablation, or a 'pacer' without AV node ablation. Am leaning towards trying Tikosyn after the recent bad news on Multaq study. My EP was pushing Multaq 4 months ago but now leary of it. Says Tikosyn has minimal side effects. I want to search for the BEST EP in the the country for a cryo-ablation of left atrium, who has experience with 'experienced' patients like me, if Tikosyn does not work. Any thoughts or recommendations??

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BTW, I should have also mentioned I can not take Cardizem/Diltiaz with propafenone (way too slow) and use it only when in 140BPM A-flutter to slow down for a natural cardioversion. I do take Pradaxa with the propafenone, and have no known bleeding problems, even with a low dose aspirin daily. I never had problems with warfarin either. But I do have to take a stomach acid preventer now. I have been assuming it is because of a mild hiatal hernia caused by severe consitpation from all these heart meds. They are way more powerful than Imodium, for sure.

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i had a-fib for 5 to 6 yrs before i got health insurance,then they jumped in and started to stop it..electro carido version.
it worked for 3 weeks,next they tried cryo-ablation on 10/6/11 and put me on multaq and perdaxia to replace the warfin. i am 55 yrs old,my birthday was the day of the ablation.so far i have noticed a few pvc's but the main complaint is i feel like im 15 yrs old again! i dont ever remember feeling this great! yesterday i stopped the multaq and im noticing some high rates and head ache little sob but nothing i cant handle so far..

the reason for stopping the multaq was getting my sleep apnea under control,which is what there saying started the a-fib..fingers crossed for remaining in normal sinus rythem..man i feel great..thx to DR. Jeffery Cogert Hillcrest Heart Health Center Tulsa,Oklahoma

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Hi Steve, I was on Multaq for 2 years and had my first ablation end of Sept. Made me so much worse, am in AF 24/7 now, very discouraging. They then put me on Flecainide, still no improvement so am going to be put on Tykosin which is supposed to prevent AF. Have you found any side effects with Tykosin, would be interested to hear, thanks so much.

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Suzanne, Make sure you do a thorough study on Tykosin first, doctors rarely give you all the details.


Tikosyn Oral Warnings

Though this medication often gives great benefits to people with irregular heartbeat, it may infrequently cause a serious new irregular heartbeat. Therefore, when starting, restarting, or increasing your dose with this drug, your doctor will recommend that you stay in the hospital for at least 3 days for proper monitoring. Before your doctor can prescribe this medication for you, your doctor must have completed the Tikosyn Education Distribution Program. Only pharmacies that have enrolled in the T.I.P.S. program may dispense this medication to you. Talk with your doctor about the benefits and risks of taking this medication.

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Steve,

Your best bet is to try the ablation. I am a 49 year male and have been dealing with AF for over 20 years and in 2009 had the full Maze procedure by the Dr that recently perfected the original Maze procedure (Dr Niv Ad.) at the Inova Cardiac and vascular Institute in Fairfax, VA. I have been to several other heart centers and had 3 ablations before the maze. I think that the Inova center is the best in the country. Even after the maze I still had occasional AF and fluter so have been on Mutaq and Diltizem for over a year with excellent results and no side effects. I haven't changed my very active lifestyle or regular social drinking habits and have not had any problems. Dr Ted Friehling at Arrhythmia Associates in Fairfax, VA is an excellent EP as well as all the Doctors at his practice as they are all specialist in heart arrhythmia. wellness.com/dir/1133411/cardiac-electrophysiologist/va/fairfax/ted-friehling-arrhythmia-associates-md
Check them out on the web.
inova.org/patient-and-visitor-information/facilities/inova-heart-and-vascular-institute/index.jsp
I am thinking of having another ablation as they tell me they can cure the flutter with another ablation it's just after all the other surgery I am not in a hury to do it again as long as I feel great taking the meds. It would be nice to get off the meds and additional expense so will maybe do it early next year. Good luck

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Thanks steve, I will try to do more research on Tykosin, my main concern is what other drug or procedure will get me back into sinus rhythm? It's horrible and very exhausting being in afib all the time. Thx for your advice.

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Hi gang.

Just want to update you all. I have been tinkering with my Multaq dosages, and have dropped back gradually to 1/4 tab ONCE a day - far below the therapeutic level.

Man, oh, man - what a blessed difference. I'm actually sleeping at night, and gradually catching up on my nearly 4 months of nightmarish sleep deprivation and daily exhaustion, and am actually functioning productively at work again.

Not a peep of afib, but I'm not counting on it not returning. I'm adding back my magnesium and potassium, and am able to get some exercise again. I was too beaten down to do anything.

I'm glad Multaq is not problematic for others, but it sure has been for me. It took a while to really hit me so hard, but the intense dreams and broken sleep patterns started the very first night on it.

I am going to try working back up to a higher dose, just to see, but I hate making myself a lab rat. Sometimes that's the only way to know.

There is still some very strangeness about how I feel, and also, some of my intense cold feeling has diminished - always wearing sweatshirts on an 80 degree day was no fun, but a lot of that remains. I'm still trying to sort out which effects were coming from the Multaq and which from the Pradaxa, or the combination of the two.

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Any one have any info on Flemeton? One web site it is a scam just to take your money. It is sponspered by a so called "Gordon Herbal Research Center" out of New Zealand. Any information about this GHRC and the 100% natural product they are marketing would be helpful. Thanks Dano

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Ed..

How did you treact with the Wine? I miss a glass of red each day...but..scared to death. Doc told me " NO WINE"

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Here is a progress report on my moving from propafenone/Rythmol and sometimes diltiaz/Cardizem when in A-Flutter to 250mg dofetilide/Tikosyn twice daily: I had to stop heart meds for 5 days and checking into cardiology for 3 days 2 nights while they administered 250mg of Tikosyn twice daily. Everything looked good and the EP said I had enough room in my EKG timing to go to 500mg if necessary. I stayed in sinus rhythm for a week and this time went straight to A-Fib instead of A-Flutter.

I have not had A-Fib in 5 years since my 2006 mini-maze surgery (after my two ablations in 2003 and 2003). I had no probklems and was in nice sinus rhythm for 4 years. Then I started having spells of what the EKG indicates is 'atypical' A-Flutter, originated in the left atrium and running in the opposite direction to the usual right atrial A-Flutter which is quite easily fixed by ablation. I had all the cardiologists and EPs from the med school checking on me during the 3 days, because I am such a study in a healthy A-Fibber at age 66.

I had started taking my old supply of flecainide from before my 2006 mini-maze surgery when I started seeing this new EP after moving. My new EP won't go for flecainide anymore because he worries it can suddenly go pro-arrhythmic in some cases, especially if any cardiovascular disease, and that aint pretty in 5-10 minutes. He did mention that if I had any cardiovascular disease with A-Flutter running from 140 at idle to 200+ when i was exercising that I would have been dead, in his opinion.

My new EP was a big proponent of Multaq early this year and on that board, but now is avoiding prescribing it because of the recent Pallas study that the FDA stopped because of higher death rates. He worries because there are a number of major different problems that have now occurred and he has become quite negative.

Back to the Tikosyn: I do love the absence of side effects. I dropped around 10 pounds of water weight to about 181 in just a couple of weeks (and not eating any less, either) and my ankles and feet don't swell daily like they did with propafenone and diltiaz. And I sleep and feel better with more energy and better cognitive ability. I am an electrical engineer and a financial planner on the side, so I notice any impairment of my cognitive ability when doing math in my head. Everything is now great on Tikosyn except I can't lose this new A-Fib. It idles at 100 bpm and exercise feels relatively good for full time A-Fib, and I am not having the dizzy spells etc I used to years ago, so my EP seems not concerned for the moment. They have me scheduled back in cardiology for another 3 days in mid-January to increase my Tikosyn dose to 500mg twice daily.

Maybe i will get lucky and spontaneously cardiovert, but i am starting to be doubtful after a month in A-Fib. However, I have read that Tikosyn is the most effective drug for spontaneously cardioverting, and is more effective after a year than after a month, so that is encouraging. I will be back after a report in a month or two. The one good thing about 3 days in cardiology is I get to spend a lot of time talking to the med school's cardiologists and EPs. It is interesting conversation. Maybe I will go to med school and become an EP at age 75 or 80!

BTW, after talking to all the cardiologists at the Med school, I am now concerned about taking Pradaxa. There is no antidote in case of severe bleeding like there is with warfarin/Coumadin. All they can do is keep flushing out your contaminated blood with transfusions until they can get some clotting. So I have unilaterally dropped to one Pradaxa with half an aspirin daily (12 hours apart). My stroke risk is low as I am healthy and active, and have had the LAAL (left atrial appendage ligation) during my mini-maze surgery. The good thing about Pradaxa is there are a couple of new and probably better alternatives coming soon.

I would love to go for that final ablation cure which would last, but after all my procedures and A-Fib experience for the last 25 years, am reluctant to undergo any more procedures unless it is by the world's leading EP who has done a hundred+ highly experienced A-Fibbers just like me. i don't want my sinus node messed up at age 66. If I need a pacemaker at 85, fine. But I am trying to delay that inevitable device implant for as long as I possibly can (much to the chagrin of several cardiologists over the past 19 years who wanted to sell me one).

I will report back late if/when any change on the increased Tikosyn doseage...

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Dano,

Flemeton is a pill made from wattle bark, elephant creeper, sweet root, coral calcium, Spanish chamomile, cloves, vermillion, Indian bay-leaf, nutmeg and iron compound.
===========================

Medsafe:

Medsafe today warned the public of 65 overseas websites that purport to be based in New Zealand and are touting unapproved herbal products.

“We would like to warn the public that these websites are selling products that have not been assessed for quality, safety and efficacy in New Zealand. Neither has consent been given to the advertising or distribution of these products in New Zealand,†said Mr Derek Fitzgerald, Medsafe’s Manager for Compliance Management.

The company operates at least 65 websites offering “cure alls†for various illnesses and medical conditions. It claims that the herbal products had undergone clinical trials conducted “under the regulations of FDA and the New Zealand Health Authorityâ€.

“Our investigations indicate that all 65 websites are operated from overseas and a money-making scam,†according to Mr Fitzgerald.

Medsafe and NZ Customs took part in an international operation from 16-20 November 2009 targeting the online sale of counterfeit and illicit medicines.The International Week of Internet Action was coordinated by INTERPOL and the World Health Organization’s (WHO) International Medical Products Anti-Counterfeiting Taskforce (IMPACT) to highlight the dangers of buying medicines online, and was supported by the Permanent Forum on International Pharmaceutical Crime.

The Permanent Forum on International Pharmaceutical Crime (PFIPC) is an international forum formed in 1998 that aims to encourage inter-agency cooperation in combating the serious threat to public health from the various forms of pharmaceutical crime. The PFIPC works in cooperation with a separate Forensic Group, which provides scientific expertise, and with other interested bodies including the World Health Organization, the World Customs Organization, and INTERPOL. New Zealand is a member of the PFIPC.

Medsafe has so far identified at least 65 product websites operated by Gordon’s Herbal Research Centre.

flemeton.com is on that list.

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