Would like stats re: recovery/going off meds

[my4kidsma]

Well, I'll be the first to post something here.

I am 1 1/2 years post dx. My EF at dx was 35, my echo 2 wks ago was 55-60. The NP at the cardio's office said that it appears that I'm recovered (as in PAST tense WHOOHOO!), but that she is reluctant to take me off meds. She sited a patient that had heart failure, not PPCM, who appeared to be recovered so they stopped his meds. He relapsed and has never fully recovered since. She said that in 6 months we could discuss again about weaning me off meds if I'm still doing this well. I was not the one who brought up the subject of stopping meds (tho' I would have if she didn't), she was.

I was just wondering if there is any information on stopping meds post PPCM recovery?

Thanks for your help.

[mikeyandBellesmommy]

From what I have seen here a lot of the girls taken off meds have done fine. I am sure someone else has more info, but like I said I think most of the girls taken off have done well.. My doc is thinking of taking me off. I am on Vasotec twice a day and I am a little worried..

[SusanD]

There are not currently any studies that I am aware of that have specifically examined beta blocker/ACE removal in PPCM patients who are recovered. They *did* do a study a few years ago with cardiomyopathy patients (I'm thinking they were either viral or ischemic). Patients whose EF was recovered were removed from beta blocker therapy and a large percentage of those did relapse back into heart failure. Kudos to your NP for being aware of that study...her feelings echo that of my cardio. Evidence based practice (i.e. letting research guide your clinical practice) is a good thing and until we have further studies specifically involving PPCM patients, it will be hard to know.

I should also add that while my cardio admits to not having the research, his path for me in the future is somewhat sketchy. We are all living longer than women with this disease did before us. There are lots of womem here who are completely off meds and who are doing *great*. I think a lot of cardios are taking the cautious approach and if they remove meds they are doing it slower and with more frequent follow-ups and echocardiograms.

[Laurie]

I was taken off meds about 3 years ago. My EF was 5-10% at diagnosis. I did OK for 6 months. At my 6 month follow-up I had high blood pressure 140/100 range. I was given Diovan and have been taking it since. My ef today is 45-50%. My LV is on the upper limits of normal size. Hope this helps.

Laurie
PPCM 2000
Mom of b/g twins

[tabs]

One woman who was dx one month after me with an EF 35% was taken off all her meds (at her request) when her EF returned to normal. She then started back to work and suffered a relapse. She was placed back on her medications and was able to function normally at work. It seemed that work was just that extra bit of stress.

I believe that Dr Fett has posted before that our EF's on meds may not be our true EF. This means that removal of medication should be done slowly and while monitored. It is possible to have a drop in EF once the meds are removed showing your "true EF".

Twilah

[catintx]

Well, I was not recovered, but I took myself off meds 1998 or 9. My EF was 40%. That was the one thing *I* could control when I was married to my ex. 2000, my EF was 25. I was placed on Coreg and few other things. Six months later, my EF dropped to 20. I've gotten it back to about 40 (FINALLY!) after losing weight. But I didn't know this and gained it all back. Dreading the echo this spring.

Looking back, it was only one pill a day. Think of it like a vitamin. Don't get caught up in "I'm sick and I'm dependent on medicine" like I did.

[mom2gageandkeely]

I have been off meds since 1998, 9 months after PPCM. I have been fine, veen increased Ef from 54% when taken ofmeds to 65- 70%

[JAMESFETT]

We define "normal" as being in NYHA Functional Class I (normal function, no symptoms) and left ventricular EF greater than 0.50 (> 50 percent) either on or off medications. That is a happy stage to arrive at because then we can consider phasing out medications. Some patients make the decision and by their decision, go off medications. If their function remains good, we know they are indeed recovered. If their EF slips back we know they were not yet recovered. We like to slowly phase out medications, first off diuretics, then off ACE-Inhibitors, and last of all off beta-blockers. Because we do office echos it is easy to monitor left ventricular function because for that we don't need a full tech-generated echo, just a view of left ventricle in systole and diastole. If, as we are slowly withdrawing medications there is a significant drop of EF, we know it is still too early and give it another 6 months before trying again. There is no clear test known (yet) that will tell us, "Yes, this person is fully recovered." So we have to use the titration process with careful monitoring.

James