stopping meds?

[crystalr]

I have noticed alot of women being able to stop their medication.My doctor has told me I will never be off my meds.Dx EF of 30%. 10 mths later 55%.Should I get a second opinion?

[melissamph]

My cardiologist didn't want me off of mine either. However, I am losing weight very rapidly (I had gastric bypass 2 weeks ago) and my blood pressure has come way down so they had to lower my Beta Blocker (Coreg) and totally take me off of my Ace (Altace). Most cardiologists that I have worked with like to keep you on a low dose of Beta Blocker forever if you can take it. My doc said though I am at 65% EF at 2.5 yrs out once you have gone into heart failure it is easier for you to go back into it than someone who never has been. So, in essence to my doc it is a security issue. I always encourage 2nd opinions though!

[JAMESFETT]

Congratulations on your excellent progress! You are well on the road to healing and full recovery. No one knows the best time to discontinue medications in PPCM. But many PPCM patients can eventually get off all heart failure related medications. In general, a good progression as improvement continues is to remove medications in this order: first diruretics, second ACE-inhibitors, lastly Beta-blockers (amongst which, my first choice is carvedilol). The process is guided by echo results and what happens after return to EF >50 per cent and then titrating down and off medications. Also, in general, it is better NOT to stop taking the final medication for AT LEAST one year after diagnosis. (to prevent flare-up of inflammatory cardiomyopathy) In addition to normal echo, stable during the process, it is good to have blood hs-CRP less than 5 to10 mg/L, indicating probable lack of ongoing inflammation, and blood BNP always in the normal range. Finally, each individual is unique and only your own cardiologist/consultant has all the information to make a good recommendation.

James

[amyls]

My Doc too has said I will never be off meds, but I am amost 5 yrs out and at 45-50%. I'd rather be safe then sorry, There have been a couple girls on here who have slipped when going down or off their meds.
Good Luck! And Congrats on such great numbers! Many of us would love to be where you are!! :)YEAH!!!
amy

[marissar]

My doc said I would always be on them. But i'm off of them. I started getting sick on them and after I started healing they were to much for my bp and by putting my bp so low my hr started sorring. He called it drug induced tachacardia.

[Natasha]

At my last appointment, my doctor mentioned the possibility of going off meds. That terrifies me! After 3 years of strong improvement, I suddenly had unexplained arrythmias. They have increased my beta blocker to counter the arrythmia. After that surprise, I don't ever want to go off my meds.

[SusanD]

Same boat here kind of.....my cardio says (and I agree) there are really no good studies on ppcm long-term survivors and med removal. I would really love some studies. Until then, he has said he would pretty much prefer to keep me on at least my beta blocker. I was at 65% last year and he was ok with taking away the ACE. I tried a few months without the beta blocker because I felt like I was living in a memory fog. Long story short, I started taking it again last week because the PVC's were driving me crazy. I will probably request a Holter Monitor study because they just aren't going away.

[SarahsMom]

My cardiologist took me off all medications in Feb. (year after diagnosis). I was really scared at first b/c I noticed rapid heartbeat the first week of going off all med's. I can tell you now....I feel better than I've ever felt in my life. I lost weight almost immediately...I'm down from 128lbs to 118lbs. I have much more energy and my heart is very strong....I work out 4X a week and never have shortness of breath anymore (I did when I was on the coreg). I don't have those annoying pains in my heart and everyone notices that I'm happier and healthier and I think it's from going off the med's.

I was initally afraid that my cardiologist took me off the med's prematurely but, now I feel he knew what was best....listen to your cardiologist...they know if you're ready to come off them or not.

I have an appointment in August (6months after being med free) he's going to do an echo....I'll be SHOCKED if my EF has gone down.

Love,
Kari

[Stephanie'sbigheart]

Sarahsmom,

I found the above post and wondered if all the symtoms ie, SOB, chest pains stopped once you were off Coreg? I too have the same symtoms and my doc things it is med induced. I am scared to go off them for the fear of my EF dropping. I am not yet 6 months DX.

If so how long until they were gone after you stopped your meds and what doses of meds were you on?

Thank you,

Stephanie