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Real members of MyHeartDiseaseTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Dofetilide (Tikosyn).

A MyHeartDiseaseTeam Member asked a question πŸ’­
San Antonio, TX

Been having left leg weakness and feels like tendon is achy near the knee. I spent 5 days in hospital when first given this medication as it causes Long QT. So two doses a day and then 2 hours after each dose an EKG to see if I tolerate the medication and the QT wave is okay. Today is the 12th day I have been using this new product and things just gradually come and go. The weakness in the leg has not. I was able to do yardwork today and did walk about a half mile with no issues. I have been… read more

July 22, 2023
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A MyHeartDiseaseTeam Member

I read up on the medication and I would have a curious conversation with my cardiologist concerning it. It is still a bit iffy if you ask me. First of all you need to spend the first 4 days that it is given to you in a hospital because of its ability to cause long QT waves which I already have and can cause severe SVTs which I have the life threatening form. They tested it on 148 people of which 86 couldn't take and it's very expensive for the generic form. It was first given provisional approval in 1999 and could only be prescribed by the program doctors and could only come from program pharmacies. The provisional approval wasn't lifted until 2016 and the FDA cleared its approval. But I would be very afraid of and arrhythmia medications that can cause kidney failure in three day along with causing the risk of tachycardia apolymorphic ventricular associated with QT interval prolongation, a severe dizziness and fainting. It also causes Supervevtricular Tachycatdia. That is SVTs and I suffer with the most severe form that is life threatening. A super long list of meds can't be taken with it and for those of us who are on anticoagulant and blood thinner those are out of the question as well. I have a condition called hypercoagulability and my blood would thicken and clot without them. I was implanted with an A-ICD in 2018 because of my severe arrhythmia problems. I am doing great and haven't suffered another severe SVT, nor the SCDs that accompanied them. SCD is the abbreviation of sudden cardiac death.
Take care,
Robin

July 22, 2023
A MyHeartDiseaseTeam Member

RobinHodgesPetruchyk2. This, your answer, is what makes this site so valuable, helpful and supportive. Great job! 😎

July 22, 2023
A MyHeartDiseaseTeam Member

Hi Team,

Saw the Cardiologist (EP) rhythm doctor yesterday. He stated the medication is not the culprit. Told me to get with my primary doctor for a referral to Musculoskeletal Doctor for evaluation. Pain does happen near the pelvis back of thigh hamstring area down the leg to the foot. I would say sciatica. I probably caused it as I am very active individual and being laid up in a hospital for 4 nights and 5 day's without much stretching and walking further than the bathroom. I get home and they say to take it easy and I guess stretching with resistance bands on my legs wasn't smart. I do have lower back issues with my spine degenerative disc disease (old age???) that my core wasn't up to snuff.

Anyhow he looked at my blood labs and stated kidney's look great eGFR99 and Creatine .71 cause Dofetilide gets out of the body through the kidney's. He did inform me to have an ablation (Catheter) I do have Paroxysmal AFIB and it may take care of the AFIB. He had a CT scan of my heart while in hospital and feels that the amulet procedure versus the Watchman would better suit me. I do have issues with aspirin products (GI Bleed). So he asked me to read u on it. Not certain when he wants to do this Amulet procedure. Supposedly it will get me off Eliquis. If the Ablation works it may take me off the Dofetilide. But I still have Bradycardia and from what I have read if it isn't your thyroid causing low heart rate or lifestyle, then the fix for that is Pacemaker. Anyhow will let you all know when things happen with procedures as well as medications.

Have a great Weekend!! 7/29/2023

July 29, 2023
A MyHeartDiseaseTeam Member

Reading these stories and questions has sent me to research sites constantly and I am learning much BUT. I know our bodies often act in unpredictable ways. Sorry, I got nothing but medical professionals don't know everything? 😎

July 22, 2023
A MyHeartDiseaseTeam Member

Thanks CarynWebb,

I think you are right as it has all the making of Nerve i.e. Sciatic. Didn't realize you were on the same medication? I take the generic form (Dofetilide, 500mcg every 12 hours). Your previous posts indicated you did an ablation. They have taken a CT of my heart while in hospital in the event the medication doesn't work for me. Medication unfortunately doesn't address my bradycardia.

July 25, 2023

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