Dr. Fett - Weaning off Toprol XL?

[bmhill71]

I am now more than 3 years post diagnosis. At time of diagnosis, my EF was only 8%! This past January, I saw a new cardiologist, who not only told me my EF was over 60%, but that if he didn't have my charts in front of him, he wouldn't have known I had a heart condition!

My question is, at this point would it be safe for me to start weaning off my Toprol XL (and other meds)? I still can't work because I'm so exhausted from all the meds I take, but I don't have another appt with my cardio until next Jan (I'm on a once a year schedule now) and since I have a very high co-pay for office visits, I'm hesitant to schedule an appt to discuss this unless there's a good chance he will be willing to change my meds.

[JAMESFETT]

I'll give you a generic answer about what I think for someone in your situation, but of course I do not atttempt to advise about individual patient treatments because that is an issue between the patient and her physician.

In general, anyone who is 3 years out from a diagnosis of PPCM, has a normal echo with normal left ventricular systolic function, it is very safe to be taken off all medications that were given for heart failure. There are cardiologists who consider use of beta-blockers "for life" in PPCM patients, even when they have returned to normal; but there are no studies to support that plan, while there are studies showing that in a reversible condition such as PPCM, heart failure medications can be phased out and discontinued with no adverse effects. Because no one knows for absolute certainty precisely when to discontinue ACE-Is and BBs, I urge PPCM patients to continue medications for at least one year after diagnosis, even with return to normal before that. In general the phase out involves first eliminating digoxin (if it had been used in the first place), next diuretics, next ACE-Inhibitors, and last of all Beta-blockers. If anticoagulants had been used, in general it is safe to phase them out when the LV EF goes above 40 percent, barring other indications than LV clot.

Hope the general guidelines help.

JDF

[JAMESFETT]

P.S. How terrific that you have completely recovered! Congratulations and thank God! I believe that with earlier diagnoses, more and more PPCM patients will recover completely with the effective treatment available, and the newer, unconventional treatments just waiting in the wings.

JDF

[tabs]

I just wanted to echo Dr. Fett's sentiments about your status. That is a wonderful EF!!!! I started at the same place you did (7%) and 6 years later am still only at 43%. Congrats on the winderful numbers and here's to hoping that you can get off the meds if you so desire.

Twilah

[bmhill71]

Thanks for the information. I think I'm going to try to schedule with my cardiologist w/in the next month. My guess is he'll want to keep me on digitek (I've been on it most of my life due to a congenital heart defect) and Altace because my blood pressure still isn't as low as I would like. But it would be so great to back off on the Toprol and maybe have some energy again...