SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

My daughter and I have been diagnosed with LQT3. We have been on Beta blockers for 3 years now. Recently we have been asked to try adding mexitil as a daily med along with our beta blockers. We have been told beta blockers are not very effective in protecting patients with LQT3 and that mexitil is now something new they are starting to try on their LQT3 patients. I have been reluctant to start it for both my daughter and I because it has a very nasty list of bad side effects.

Has anyone else who has LQT3 had their Dr suggest they try this drug and if so how did you tolerate it?

I have not been able to find or talk to other people who are currently taking this drug for LQT3. Please let me know if you have any experience with this drug.

Thanks so much

C

Hi,
My son has been on Mexeltine for 8 years now. He was diagnosed with LQTS at birth and now just turned 8. He is also on Nadolol. Not sure which type he has. He has had no side effects of it. Not sure what you have heard about but i have seen nothing out of the ordinary with him. Hope this helps!

Christine

My son has been taking Mexelitine for 2 years now, since his DX of LQT-3. At first his medicine was compounded and he worked his way up to 150 mg 2x/day. He had monthly blood tests to measure the levels of Mexelitine in his system and then they would increase it. As for side effects, originally he had gastric discomfort but that gradually dissappeared. The only thing really remaining is photo-sensitivity. His eyes do hurt and tear in the sun. He is also very tired but his MD feels it is not related. His electrophysiologist did not want him on Beta-blockers, my understanding is that would be contraindicated for him with LQT-3. Please note however that he has never had a fainting episode. It was discovered because he suddenly had difficulty playing hockey and he was also taking Adderall at the time.


Personally, I would sleep better at night if he had an ICD placed which his MD does not want to do at this time. Most of the time now he has normal or near normal ECG's but I don't want to wait for a big episode.

Our experience with this drug had been fine. I would always expect some body adjustments when starting any new medicine. My biggest concern is his forgetting to take it sometimes. He is almost 16 and has a mind of his own. All in all, I really can't complain about this drug. My daughters recently had the genetic test done and if they come out positive, they will also start the drug.

Good luck to you both,

Heather