Tykosin Therapy

[Bilbo1933]

I am 54 years old and been dealing with A-fib for years,  I had an ablation for flutter in 2001, did not work. Another ablation for afib in 2004, 2005 and July of 2008.  All done at Johns Hopkins, all to no avail.  I have been on virtually all the meds, beta blockers, amidoerone, rythmol, flecanide, etc, except Tykosin.  I am going into Hopkins on 4/13/09 for 72 hours to try that med.  Not sure what I will do if that does not work.  My goal is to avoid a pace maker and get back to exercising.  I am healthy, no CAD, HTN etc, besides the A-fib, which I have symptoms at least once a week.  I always convert on my own and can always tell when I am in Afib.  I cut out all triggers, caffine etc. years ago including moderate amounts of alcohol recently.  Have stuck with Hopkins, thinking it is Hopkins, should be one of the best.  Has anyone been on Tykosin theray?  How long?  Did it work? Side effects?  Any other suggestions, like I should have gone to someone else?  Also, know of anyone that has had a 4th ablation?

[Roochie]

I have just had my first ablation and am taking Tikosyn.  I am not "feeling the love" from this drug.  I have been back to the ER twice with major episodes and was admitted for a cardio conversion when I converted on my own with the help of Cardizem.  Is there no hope?

[Bilbo1933]

Sunny,
Thank you for your suppot.  Checked into Hopkins this morning for my tikosin loading.  I have books, DVD player and obviously my computer.  Again, thank you for your input and want to wish you all the best in health.  
Bilbo

[GrammaHoney]

I've been on tikosoyn over a month now...dosage is 125 mg twice daily.  I took lots to do in the hospital also....reading, knitting, journaling, etc.  it helped the time to go by. At the higher doses, I had some v-tach, so they decreased the dose. So far, doing well, and more energy without the a-fib interfering. I'm 69 and also have heart failure, which the a-fib was worsening.  So far so good.....  as for Johns Hopkins.....sounds great to me!!!
Sunny

[Bilbo1933]

Brook,  

Thank  you for your comments and support.  Comforting to know that there are those out there that have had 4 ablations.  Out of curiosity, where did you have your procedures?  I wish I had found this web site earlier, nice to be able to talk with others in the same boat.  I'll keep you posted.  Thanks again.  Be well and do good works.

[ksig]

Hi, Bilbo

I did not quite finish my story as not to worry you or have you think that my course of action was going to be yours... On March 5, I had the AV node ablation and now pacing 100% by my Biotronik pacer.  I am off all arrhythmia meds but still on coumadin and will be for the rest of my life.  I feel great.  I had a stress test today and I am firing on all burners.  I never did have heart disease or coronary probs...only AFib.

Don't second guess your decision to go to John Hopkins.  They are world renown.  It is AFib that is difficult to control at times.  I, too, am the patient of the chief cadiologist/EP at UCSF.  I trust him implicitly.  I have never thought of going to someone else.  
Good luck to you.

[Brooke_38]

As I read your question and history...It was almost like reading my own...I have been in the EP lab 5 times and have had 4 ablations. I, too, have exhausted all medications to no avail. I was admitted to the hospital for 4 days last month to start Tikosyn. I am currently taking 500mcg 2 times a day for treatment of my Atrial Fib. I have been trying to avoid the AV-Node ablation and pacemaker implant. Unfortunately, I think that this will be what I am facing...I have not found relief being on Tikosyn, but then again nothing that I have had done has seemed to do the trick. There are many patients that have benefited by this drug, and I certainly hope that you will be one of them:)

As ksig suggested, bring lots to do to pass the time...it gets really boring...I brought my laptop and was lucky that the hospital had wireless internet access:))) I brought books and DVD's as well.

Keep us posted with your progress...I will defintely be interested to hear how you are doing:)

[Bilbo1933]

ksig,
Thank you for the response and heads up on my time in the hospital.  So you have had 4 ablations.  Technically I have too, however the first one was for A flutter and was only in the right side of the heart.  My EP at Hopkins says it is not uncommon to do that many, but suggested we try Tykosin first, which I opted for.  I guess I questioning myself, if I should have gone to someone else instead of sticking with the head EP at Hopkins.  You like to think the Johns Hopkins has some of the best in their fields. Of  course there is always that percentage that it just does not work on.  Did you ever discuss actual surgery?  Although they do not usually do that just for Afib.  BTW, did you ever get tested for sleep apena?  Apparently there is a correlation between the two.  My test said I did not have sleep apnea.  Best of luck to you and again thanks.

[ksig]

Hi, Bilbo
I have had 4 ablations for AFib over the span of 2.5 years as well as a pacemaker implant in 200.  Last May I was placed on Tikosyn. I was on Tikosyn for 10 mo.  It did work for several months and I was AFib free.  I felt fabulous for those months.  I was on 500mcg twice a day along with other meds. But soon the ugly head of AFib reared back up.  I did not have any ill effects from the Tikosyn. Initially,  I was in the hospital for 4 days to do the Tikosyn loading.  Bring a good book.  I read two while I was there.  I also brought a laptop so that I could still be connected to the offic and surf the net.  I also brought some DVDs to while the time away.  I had my work done on the West coast.  

I wish you luck with the Tikosyn loading.  Bring things to do in the hospital.

ksig