Dofetilide (Tikosyn): adjusting dosage

I have been on Dofetilide for 11 months. It worked for about 10 months. For the past month I have been having a lot of pounding quivering heart issues. Has anyone else had this happen?

Hi @elizabeth1941, You'll notice that I moved your new discussion over to the one you had previously posted. The benefit in grouping discussions together is that it not only involves everyone that was discussing the issue with you before, but it also updates our members on how your doing. Have you spoken with your physician yet regarding the pounding quivering heart issues?

Would love to hear from those who have or are taking tikosyn

I have been on it since my 2nd ablation

Hey @jmgm here is a discussion that is talking about Tikosyn so I moved your post so you could connect with others.

I've been taking it for 6 years. My initial loading dose hospitalization resulted in 125microgm every 12 hrs. After about 3 1/2 years it did not seem to be working as well. My cardiologist put me in for another loading dose but bumped it up to 250microgm every 12 and that has worked OK. I have paroxysmal AF and have episodes about 7 days a month. I cardiovert spontaneously. (also take MetoprololLA 25 daily, and Metoprolol tartrate 25 Q 12hrs as need if in AF. ) I think I might try 500 microgm one of these days , but previously it prolonged my Q-T interval. So far, OK on Tikosyn-no side effects.

I have been on out and now they can’t find the Afib and want to take me off my medication completely.

I'm 77 years old and have been fortunate that my joints have not given out on me. I still can walk 18 holes of golf and bike long distance. I had a cryoablation in 2017 and due to recurrence, I had a radio frequency ablation in 2019. I still have paroxysmal AF about 7-10 days a month. I have basically stopped drinking alcohol except a small one a few times a month. I've gone from Tikosyn 125 ug to 250ug and will ask my cardiologist to try me on 500ug (have to do the 3 days in hospital)--even tho I have a resting heart rate below 50. I do think my body has gotten used to the tikosyn and my Q-T prolongation may not be the problem it was when was first loaded. Has anyone else found that they were able to increase their dose of Tikosyn (dofetilide) after being on it for a few years? From what I'm reading, many of you have found that Tikosyn eventually stops working for you, but if it can give me a few more years of sinus rhythm, I'm OK.

@jimorthos
Good morning! I have been taking dofetilide (Tikosyn) 250 mcg for almost 3 years. I also have a genetic heart disease, Apical Hypertrophic Cardiomyopathy, which makes afib more difficult to tolerate and treat. Because of the ApHcm I also have a high degree of diastolic dysfunction. When I started having self limiting afib episodes about every three months, my genetic cardiologist added jardiance to "fine tune the diastolic dysfunction. " Since that time, I have been afib free for a year and hoping it stays that way. My afib is persistent with rvr so without dofetilide I would be in afib all the time with high heart. Despite the ApHcm, I feel great, am in good shape, and walk at least 2 miles a day and exercise. I am 82 so am very thankful this drug continues to work.

@elizabeth1941 My take is only anecdotal, but some folks that have been on Tikosyn, told me that it did not prevent the atrial fib after being on it for a while. I started with 125mg twice a day, and now take 250 mg twice a day with episodes on and off during the month. Fortunately I seem to spontaneously cardiovert after being in AF for a few days. My concern is that Tikosyn may completely quit working for my AF. So far, I'm sticking with it.

Thank you all for sharing. Reading your posts have been very informative and hopeful. I have been dealing with Afib with RVR since May, 2021. I have had 4 ablations and been put on many different medications (Sotalol 120 mg & 80 mg, diltiazem, Amiodarone). Some have lowered my BP which was already on the low side. I am very hopeful with Tikosyn. Recently I was loaded on Tikosyn 250 mcg after my last ablation. While in recovery post-ablation, I had an episode of RVR with HR 155 - 200. They cardioverted me (my 17th cardioversion) and then admitted me to ICU and started me on the 250 mcg Tikosyn. I hope this 250 mcg works to keep me in NSR for at least 3 years. My EP is concerned it will not. He says 500 mcg is what I need. However, my EP tried me on 500 mcg Tikosyn a year ago. One night while being loaded in the hospital my dose was held due to an issue with my ECG. I was discharged from the hospital on day 3. The next day I had facial and lip numbness (right side only). I was told to stop the Tikosyn 500 mcg immediately. This time my EP wanted to start me on 500 mcg again but when I explained to his NP what happened last time, she spoke with the EP and they finally agreed to go with the amount the hospital pharmacist thought best. The hospital pharmacist said 250mcg would be appropriate. I weigh about 20 pounds less than when the EP tried me on 500 mcg Tikosyn so I was glad the pharmacist agreed 250 mcg best.
As a side note about a year ago I read a great book about AFib by Dr. John Day. Because of that book I have been focusing on lifestyle optimization - eating a low glycemic diet, avoiding caffeine and walking 6K steps/day. I also avoid alcohol but have been doing that since May, 2021 when this all started. Thanks again for sharing your experiences with Tikosyn. I feel grateful Tikosyn 250mcg is working and I feel so much better than when I was on amiodarone. Hope it continues to work.