4 replies to this topic

[Taylor]

Hello everyone,

Merry Christmas!

First off: got the news today that I am still PCRU; that makes 2.5 years. We missed the 2 year PCR test, so I was very curious to know whether I had hit this important statistical milestone.

That said, on Christmas Eve I developed atrial fibrillation with rapid ventricular response. This is the second time since February (trigged both by hitting my back against the bed; I was playing with my baby this time when it happened). They electro cardioverted me and I walked out 30 minutes later, but it was scary because I was having moments of faint feeling. Last time I had low potassium, this time my electrolytes came back fine.

Anyway, since I have been on Tasigna (300mg 2x daily), I have had an increase in PVCs, especially during workouts. I have also had a quickened resting heart rate above 100, for which I now take low-dose beta blocker. I have had two full-blown episodes of atrial fibrillation, some what I think are PACs (because they feel like PVCs except without the hard thud), and what I think are sporadic moments of atrial flutter. I didn't have anything like this pre-Tasigna, except the occasional PVC once every few months.

Is there a way to know if this is Tasigna related, or more underlying heart problems? I am only 27, and have had good EKGs and a good echocardiogram outside of this. I can exercise without any problems aside from PVCs. If there is no way, I'm thinking about talking to my onc and seeing if we could try a half dose, since I've been 2.5 years PCRU.

Thanks for any advice!

[Trey]

No way to know for certain.  You started on Tasigna, but you could try switching to Gleevec since you are continuously PCRU  and try that for a while.  Or you could reduce your Tasigna dosage by half (once a day).  Although this is not a tested procedure, some day this will be normal practice after continuous PCRU.  If it were me, I would reduce the dosage.  I have been on half dosage Gleevec for a few years now with continuous PCRU.

[Taylor]

Thanks Trey. I'll talk to my onc but I'll try to stick with Tasigna (the devil you know, after all). As of right now I'm going to give myself a few days off the meds while on Christmas vacation and then get back on them.

Taylor

[Taylor]

Just a little follow-up for posterity's sake. I have done a self-experiment on my dosage. Basically I restarted at a half dose for two weeks, and then went back to a full for almost two weeks. I'm cycling again to half dose.

I noticed about week two of the half dose that I hadn't had a PVC in a while, at least not while on rest. But a day or two after I went back on the full dose, I started getting them again.

I scheduled an appt with my onc, which I'll have in a couple of weeks. I'm going to talk about the half dose. As I mentioned, I've been PCRU for two years and hit that milestone in a bit less than 7 months after starting. I'm hopeful that I'd be ok.

I'm just dang tired of not bring able to take a flight of stairs at 27, or hardly playing with my baby, because of fatigue/palps/getting winded easily.

[bagdaddi]

Taylor - good luck, please keep us updated, especially if you continue the half dose.  There are a few of us on Tasigna in a similar situation, myself included, that could benefit from what you learn.  Curious as well if half dose of Tasigna would be best administered as 300mg once/day or 150mg twice/day.