Tikosyn

Hi All,

I had my PM implanted in November 2007. I feel fine...minus the shortness of breath, but I have started working out about 2 months ago...and feel even better. However, when the PM was first implanted, I was being paced about 20% of the time. When I went for my last two check-ups, it now appears that I am being paced 100%. My doc says that this can be fairly common. Since I feel fine, except for some shortness of breath that I can overcome if I just keep exercising, my doc recommended that I go on Tikosyn, and if need be, a cardiac inversion. I am 59, active (ride horses as well, mostly pleasure/dressage), and definitely would like to not alter my lifestyle too much. Does anyone have experience with Tikosyn/inversions and how well this drug is tolerated? Also, if this does not work, I guess next step might be a cardiac ablation.

Best,
Stu

Th

15 Comments

Tikosyn

by LS - 2010-04-05 03:04:00

I take Tikosyn. Have since the PM implant 1/26/10.
There are no pharmacies close by to me that are licensed to carry it so I go through a company called PhysiciansRX & they send it to me. (no additional charge) I have really good Rx coverage but this is one they only pay a % of so it costs $60.00 a month for it instead of the normal 10.00 for them.
Liz

same thing

by Angelie - 2010-04-05 03:04:56

paddles or pads....they deliver the same electric shock current needed to reset the heart to a more normal rhythm.

After having 6 ablations, they usually go in through the patient's femoral vein. Sometimes- rarely through the subclavian (chest) vein, or brachial (arm) vein. Whatever the approach- it's most likely always through the top of your heart via your SVC. I almost think it would be impossible to enter the heart from the bottom. In fact.....wait a minute...Is there even a "bottom"port of entry get in? Anyways, I had 3 ablations post pacemaker implant and they were still able to use my femoral vein for access.

tikosyn

by thomast - 2010-04-05 05:04:44

I have been on Tikosyn since may of 05. No problems, as you can see above you have to start in ahospital. I was getting it at a local drugstore, but now order it from my mail order drug company. They first put me on amarondrone and was so out of breath after a month could not walk 5o ft, then put me on Sotalol, was sick for 4 months, lost 40 pounds. Then on Tikosyn which worked great. As far as I am concerned it is amiracle drug.

Thomas

Let me tell you

by Angelie - 2010-04-05 11:04:36

Tikosyn is a very controlled drug. You must have a 3 day hospital admission to try it. It is mandatory since it can cause your EKG to become worse rather than better. Also some doctors are not even trained to administer it, and hospitals have to be trained and approved to administer it as well.
As you soon as you check into the hospital they will draw labwork and give you your first Tikosyn dose. After every Tikosyn dose, 1 hour later they will do a 12 lead EKG. They will adjust your dose according to your EKG strip and whether or not you tolerate it. Before you leave the hospital they will ensure that you can obtain the drug and will sign you up into the Tikosyn drug program. They'll make you agree to get your first doses through a pharmacy by mail, until you can get a pharmacy arranged in your town. Some pharmacies are not approved to carry or dispense the drug.
I hope it works well for you. I am a fairly tiny person and was given the lowest dose possible, but it made my QT lengthen which could be fatal. (Hence the 3 day hospital admission-that's what they're checking for)
I have never heard of an "inversion". I'm thinking that you're meaning to say Cardioversion. That's when they put you to sleep just long enough to shock you with defibrillator paddles. Sometimes shocking the heart will put it back into a more normal rhythm.
I have had 6 ablations, and 2 cardioversions, and have tried just about every drug out there. I'm a complicated case, so don't let me scare you. Most people are not as difficult as I am. I am a stubborn Taurus, and my heart has proved to be as well.

I do hope Tikosyn works for you, or whatever treatment they try next. Just remember that often times it takes a while to find the right combination of remedies to get you fixed. It took me almost 10 years.

Good luck,
Angelie

Ditto Frank's advice

by painthorse - 2010-04-06 10:04:01

I took tikosyn several years ago when it was rather new. I had to get off of it because of the side effects. I have the same phylosophy as Frank, that it is best to avoid what is not absolutely necessary. I know and respect that every person has a different definition of what that is. There is no way to know if you will get the good side or the bad side of any treatment. Not only is an ablation not reversible but some of the side effects of these meds are also not reversible. I am not a doctor so that is my 2-cents worth. You do seem to have a great pro-active attitude which is a real plus!

It is nice to find another rider. I am a western style trail rider on paint horses! Maybe someday we could get all of us riders together and have a pacemaker trail ride in some beautiful national or state park.

have a great day
pat

Decision

by stuie - 2010-04-06 10:04:05

Frank,

Thanks for your feedback. I am not sure what to be looking for if I were to get the pre and post programming report. All my doc told me was that I am now pacing at 100% and 6 months ago I was at 20%...which he said was quite a normal path to AFib. He also said that if I feel great, minus the shortness of breath that is easily overcome if I continue the exercise (i.e, I do 1/2 hours of either weight training or cardio plus 1/2 hour jog on a treadmill at 5.0 mph plus walk at least 1 hour a day...spread out in two walks), the tikosyn was to make me possibly feel even better. However, if the tikosyn does not work in the hospital, they would do an cardioversion to make sure I leave in proper rhythm. That said, I do not want to take any chances right now for something going amiss.

Stu

Stu

tikosyn

by jeanmarie - 2010-04-06 12:04:26

just to let you know I was in the hospital when they gave me tiksyon and 2 hours later in full cardiac arrest, doctor said I had an adverse reaction to it and it had never happen with patients before, but my hospital will no longer give this medicine to patients

Decision

by ElectricFrank - 2010-04-06 12:04:39

If I read your post correctly it sounds like you are doing pretty well. Unless you are having serious symptoms I would avoid the meds and ablations. While they can work magic on someone with very limiting problems, the potential side effects aren't worth it.

Particularly with ablations, keep in mind that they are not reversible. If they result in worse symptoms (which is a possibility) your only recourse is more ablations in the hope of solving the problem.

Do you have a copy of the report from your last checkup? It would help to know what your settings are and what the recorded data looks like. You need the pre and post programming report. They are required to give you the information if you request it. Also, what is your diagnosed condition?

frank

Tikosyn

by stuie - 2010-04-07 10:04:22

These comments were incredibly helpful. I have delayed my procedure for about two months. I realized while reading these responses how much I have allowed myself to be on auto-pilot and not taking enough responsibility for what is going on. I simply put a pacemaker in, took my coumadin, and got on with it. Now it is time for AFIB 101 and understand everything. Again thanks to all who responded and any additional comments are welcome. Also, for those that also enjoy riding horse, let's get together and, out of curiosity, what did your docs says about the dangers of riding and coumadin?

Thanks,
Stu

Interogation report

by ElectricFrank - 2010-04-07 12:04:02

A few of the important bit of data are:

Mode: Often something like DDD or DDDR. These affect what is sensed by the pacemaker and what is paced.

Atrial and Ventricular Pacing Voltage: This is the voltage of the spike that is delivered to the heart to cause it to contract. It ranges in the 2.0 to 5.0 volts.

Upper Tracking Limit: The highest HR the pacer will pace the ventricles at. Natural pacing if working in your heart can cause your HR to go higher. This one can cause problems if set too low. It enforces the upper limit by causing the heart to skip beats, which is exactly what an active person doesn't want when you are exerting your self. I'm nearly 80 yrs and still have pushed them to set my upper limit to 150. I don't push myself that high, but if I was being chased by a mugger in the parking lot I don't want my pacer slowing me down!

Lower Limit: This is the lowest the pacer will let your heart go. If it tries to go below that the pacer takes over and supplies pacing at the lower limit. Typical settings are in the 50-65 range, but can be set higher for various reasons.

There are a lot more, but these are a good start.

By the way the pacing percentage isn't a good indicator of changes in your heart. Often right after implant your activity level is low and your heart may not need much support. As you increase the intensity and duration of exercise you reach a level where the pacer is more active and so the percentage goes up. 100% doesn't mean your heart would stop without pacing, it just means you have reached a threshold that is programmed into it. In fact us old timers have watched our pacing percent go up and down as the settings are changed.

hope this helps,
frank

Tikosyn

by bunnykin - 2010-04-07 12:04:32

I had a nasty experience in July 2009 when I was on Tikosyn. EP had put me on this drug as usual with 3 days hospitalization monitoring ECG etc. I was on tikosyn for almost 6 weeks before my ICD detected a dangerous heart rhythm which is typical of what tikosyn may induce or cause esp. in those patients who have tendency for Long QT syndrome. My case was different in that in the 3 days of monitoring nothing untoward happened or showed up on ECG. It only happened after 6 wks on the drug. I too was awaiting tikosyn to work for my junctional ectopic tachycardia so that I need not have another ablation. Unfortunately this drug lengthened the QT so much that I went into Torsades de pointes and I was shocked back to sinus rhythm by my ICD device. Thank God one shock and I was back to normal. Tikosyn was hence taken off. Please ask your EP if you have during normal checks your ECG shows long QT cos if your ECG sometimes shows this feature, then you really shouldn't be taking the risk to use this very potent drug. Hope you feel better and all the best...bunnykin.

Med dosage problems

by ElectricFrank - 2010-04-08 01:04:03

One thing that is rarely considered with meds like Tikosyn that have a very narrow dosage range is that our bodies biochemical response isn't constant. This isn't news to diabetics, but it isn't given enough consideration with other meds. Things like stress, illnesses, diet, exercise, interaction with other meds, etc. can move us from an effective dose into a dangerous overdose.

On another note, Afib is often misdiagnosed. It is not easy to read on an ECG and the automated printout is even worse. In my case I was diagnosed with Sick Sinus Syndrome and afib, which lead to Rate Response being ON. It was only my careful analysis of my ECG, and finally building my own instrument that I demonstrated no indication of either condition. Over the objections of the cardiologist I demanded that Rate Response be OFF, and my upper tracking limit be raised to 150. I also turned down meds for either. The result has been over 5 yrs of good pacing and no dire outcomes as predicted.

just some more thoughts

frank

Tikosyn

by supcoinc - 2010-04-11 06:04:04

I started taking Tikosyn back in '07. 6 doctors including 3 cardiologists missed the signs and I died using it. I suffered a fatal cardio arythmia(sorry for spelling). The 2 cardiologists on call at the hospital agreed that the Tikosyn was the cause of my dimise. I was shocked 10 times and brought back to life by my son before paramedics and police arrived. Thks Mike, but anyway be carefull taking Tikosyn and constantly watch for signs. Mine was shortness of breath the night before.

Tikosyn

by supcoinc - 2010-04-11 06:04:45

Also, if anyone is starting a lawsuit please advise me of attorney being used.

tikosyn

by lik60 - 2010-07-16 03:07:10

I was on most of the anti arrythmics and had problems with at least three of them causing constant outbreaks of hives, plus I was still having episodes of a-fib so my MD suggested tikosyn, I was in the hospital under observation while starting it because of the risk of the dangerous heart rhythm that can occur with tikosyn. It was uneventful and I was discharged ! week later I was back in afib and had yet another cardioversion and they added metropolol to the mix. I was still having episodes of a-fib with increasing occurences so I went for the a-fib ablation. I had no side effects from tikosyn but the risks are something to consider as with anything. Good Luck.

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