Meds for cardiomyopathy – Ischemic/Non-Ischemic

Posted by archer @archer, Aug 5, 2018

Would like to know the medications and other treatments that other patients have been given for cardiomyopathy with heart failure symptoms.

@kanaazpereira

Hi @archer,

I can only imagine how worried you must be! I'm tagging Mentors @predictable and @hopeful33250 as well as fellow members @hazel516 @badboys1965 to see if they may be able to share more information. According to The American Heart Association, the main types of cardiomyopathy are:
-Dilated cardiomyopathy
-Hypertrophic cardiomyopathy
-Restrictive cardiomyopathy
-Arrhythmogenic right ventricular
dysplasia https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults

Has you been diagnosed with any of the above types, @archer?

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@archer, my "controllable symptoms" were mainly hypertension and hypokalemia (too much blood pressure and too little potassium). In both cases, an inherited variant in my kidneys was the cause, and my medication made both problems manageable. I have had no symptoms from my cardiomyopathy, which was discovered by a routine ultrasound of my heart. As to diuretics, they are the automatic first medication response to hypertension, so I got started on them. In your case, your slight edema in your extremities suggests that diuretics are less needed. I need them to deal with my sodium-potassium balance. Otherwise, I'd rather do without and take care of sodium by foregoing salty foods. I think you may be on the route to stability; one way to test that is to jot down a list of questions that you want answers to and put them to your doctor in a discussion aimed at formulating a long-term treatment strategy.

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@tahoetaylor

Hi folks I am a 50yr old woman diagnosed last year with dilated cardiomyopathy. At my most recent cardio appt last week the Dr was very pleased with my progress but I am not healed up yet. Two things: my family is fully freaked out by my diagnosis and not able to be supportive. So I am looking for support and support groups because i know loneliness/lack of support is bad for you. Also, even tho the doc says im getting better I still feel crappy mostly from side effects of my meds (carvedilol, entresto and spirolactinone). My blood pressure is normally low and with the meds is even lower. Yesterday, I tried to do a mile walk, which in the past was totally easy for me, but this time I got a pain in my jaw which spread to me head which I have never had before so now Im scared. Tests earlier this year show I have no disease in my arteries so the cardiomyopathy is probably an inherited condition. I am otherwise healthy. I would love some support and any thoughts which may be helpful.

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HEY! You say "your not healed up yet:" So your pleased doc is saying you ARE getting better! Sounds encouraging to me! Some folks are a lot worse off than us. I just went thru a "why bother" couple of bad days when told a week after airtic valve replacement, that was going well, I have to begin taking blood thinners due to my new A-fib bouts that are occurring pretty much 75% of the time now. I so enjoy my beer! And all this crap appears to mean no more. Very depressing to see my "health" going to hell in a hand basket in just days.

So I try to learn more and more about all this stuff everyday – that helps. I too came here and posted and have received some wonderful replies of support – so I am glad you came! Hope you get other's stories that help you feel better about your own situation, as well as some good info you may not have thought of yet.

Good luck! Your doc is encouraged, hope you can be soon too!

Liked by tahoetaylor

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@tahoetaylor

Hi folks I am a 50yr old woman diagnosed last year with dilated cardiomyopathy. At my most recent cardio appt last week the Dr was very pleased with my progress but I am not healed up yet. Two things: my family is fully freaked out by my diagnosis and not able to be supportive. So I am looking for support and support groups because i know loneliness/lack of support is bad for you. Also, even tho the doc says im getting better I still feel crappy mostly from side effects of my meds (carvedilol, entresto and spirolactinone). My blood pressure is normally low and with the meds is even lower. Yesterday, I tried to do a mile walk, which in the past was totally easy for me, but this time I got a pain in my jaw which spread to me head which I have never had before so now Im scared. Tests earlier this year show I have no disease in my arteries so the cardiomyopathy is probably an inherited condition. I am otherwise healthy. I would love some support and any thoughts which may be helpful.

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@tahoetaylor All of us sit in a pile of dog poop some time. I don't have what you have (I think) but if you are looking for something to read, my story is at httjps://bit.Ly/1w7j4j8 'Amyloid and Old Karl' . You might find something to laugh about, I suppose. Anyway, hang in there, and keep pushing back at the medicos.

Liked by yorlik, tahoetaylor

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Hi folks I am a 50yr old woman diagnosed last year with dilated cardiomyopathy. At my most recent cardio appt last week the Dr was very pleased with my progress but I am not healed up yet. Two things: my family is fully freaked out by my diagnosis and not able to be supportive. So I am looking for support and support groups because i know loneliness/lack of support is bad for you. Also, even tho the doc says im getting better I still feel crappy mostly from side effects of my meds (carvedilol, entresto and spirolactinone). My blood pressure is normally low and with the meds is even lower. Yesterday, I tried to do a mile walk, which in the past was totally easy for me, but this time I got a pain in my jaw which spread to me head which I have never had before so now Im scared. Tests earlier this year show I have no disease in my arteries so the cardiomyopathy is probably an inherited condition. I am otherwise healthy. I would love some support and any thoughts which may be helpful.

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Hi @tahoetaylor,

I moved your discussion and combined it with this existing discussion on cardiomyopathy. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing, and I hope you will get more support with their shared insights.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I’d really like to hear back from you; how are you feeling now?

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Any other people taking Entresto for heart failure and how you are doing.

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Yes my mom was in the hospital for congestive heart failure and is now starting Entresto this is her 3rd week and she gets it every 12 hours and it has been helping so far. But my question is if this is doing good why does she have to take coreg 12.5mgs but only half of a coreg a day can anyone help me with that question. Thank you

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@carsue

Yes my mom was in the hospital for congestive heart failure and is now starting Entresto this is her 3rd week and she gets it every 12 hours and it has been helping so far. But my question is if this is doing good why does she have to take coreg 12.5mgs but only half of a coreg a day can anyone help me with that question. Thank you

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I have heart failure. I am not on Entresto but from what I've learned is that many patients can't tolerate coreg in bigger doses so combining Entreso with a small dose of Coreg is the new heart failure treatment trend. I'm glad she's doing better.

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@heartrunner

I am in my late 30's and was diagnosed with nonischemic congestive cardiomyopathy based on a ecocardiogram about a year and a half ago. Dr. said ejection fraction is between 40 and 50 and I was proscribed an ACE inhibitor. At my most recent visit I was set up with a Holter monitor and the Dr. said I had one ventricular tachycardia event, over the 24 hour monitoring period, which lasted for a few minutes. I have had no noticeable symptoms related to the cardiomyopathy nor tachycardia. I consider myself pretty physically fit and complete in and train for several endurance athletic events each year (marathons, 50k, 50 mile, triathlon, century rides) all done with no noticeable symptoms. The Dr. has been pushing for me to start a Beta Blocker in addition to the ACE inhibitor, but I am concerned that this may impact my ability to continue to compete in endurance athletics at my current level. I also don't really want to be on any medication for an extended period of time if it is not necessary. Questions are, do I need to be on the ACE inhibitor and/or Beta blocker. What types of side affects should I expect if I were to start the Beta Blocker, both general and those related to competing in endurance athletic events.

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Well I can tell you from experience that you don't want to have tachycardia events. The medication prescribed will reduce tachycardia. It shouldn't affect you're exercise goals but if you don't take them you are risking having a significant heart event. Tachycardia can lead to cardiac arrest so it's not something to take lightly

Liked by lioness

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I am in my late 30's and was diagnosed with nonischemic congestive cardiomyopathy based on a ecocardiogram about a year and a half ago. Dr. said ejection fraction is between 40 and 50 and I was proscribed an ACE inhibitor. At my most recent visit I was set up with a Holter monitor and the Dr. said I had one ventricular tachycardia event, over the 24 hour monitoring period, which lasted for a few minutes. I have had no noticeable symptoms related to the cardiomyopathy nor tachycardia. I consider myself pretty physically fit and complete in and train for several endurance athletic events each year (marathons, 50k, 50 mile, triathlon, century rides) all done with no noticeable symptoms. The Dr. has been pushing for me to start a Beta Blocker in addition to the ACE inhibitor, but I am concerned that this may impact my ability to continue to compete in endurance athletics at my current level. I also don't really want to be on any medication for an extended period of time if it is not necessary. Questions are, do I need to be on the ACE inhibitor and/or Beta blocker. What types of side affects should I expect if I were to start the Beta Blocker, both general and those related to competing in endurance athletic events.

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Hi @heartrunner,

You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to connect with other members who may be able to share their insights.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some information you might find useful:
– Ischemic cardiomyopathy is caused by coronary artery disease and heart attacks.
– Non-ischemic cardiomyopathy is not related to coronary artery disease. This type of cardiomyopathy includes all causes of decreased heart function other than those caused by heart attack or blockages.
– The most common causes of non-ischemic cardiomyopathy are viral infection (viral myocarditis), drug reactions, inflammation or autoimmune reactions (lupus myocarditis, etc).
– Beta-blockers and ACE-inhibitors can relax the heart, lower blood pressure and slow the heart to improve filling and pumping function. https://www.mayoclinic.org/diseases-conditions/cardiomyopathy/symptoms-causes/syc-20370709

I’m tagging @predictable @hopeful33250 @thankful as they might be able to shed more light on this issue; I’d also encourage you to read these articles – the first story concerns a patient who was diagnosed with viral myocarditis (a form of non-ischemic cardiomyopathy):
– Meet Yasmin: A Sudden Detour for Heart Transplant, Then Back in Stride https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-yasmin-a-sudden-detour-for-heart-transplant-then-back-in-stride/
– This journal article outlines "Management of patients with non‐ischaemic cardiomyopathy” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861466/

@heartrunner, just as some underlying conditions can bring about cardiomyopathy, cardiomyopathy in turn can cause other complications. Have you explained your concerns about medications to your doctor?

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@heartrunner

I am in my late 30's and was diagnosed with nonischemic congestive cardiomyopathy based on a ecocardiogram about a year and a half ago. Dr. said ejection fraction is between 40 and 50 and I was proscribed an ACE inhibitor. At my most recent visit I was set up with a Holter monitor and the Dr. said I had one ventricular tachycardia event, over the 24 hour monitoring period, which lasted for a few minutes. I have had no noticeable symptoms related to the cardiomyopathy nor tachycardia. I consider myself pretty physically fit and complete in and train for several endurance athletic events each year (marathons, 50k, 50 mile, triathlon, century rides) all done with no noticeable symptoms. The Dr. has been pushing for me to start a Beta Blocker in addition to the ACE inhibitor, but I am concerned that this may impact my ability to continue to compete in endurance athletics at my current level. I also don't really want to be on any medication for an extended period of time if it is not necessary. Questions are, do I need to be on the ACE inhibitor and/or Beta blocker. What types of side affects should I expect if I were to start the Beta Blocker, both general and those related to competing in endurance athletic events.

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Hello @heartrunner. I'd like to welcome you to Connect. I'm glad that you posted about your concerns regarding a new regime of heart meds.

I have taken an ACE Inhibitor for a number of years and a little over two years ago added a Beta Blocker. I feel much better. The two meds work in different ways. The Beta Blocker keeps the heart rate slower, which protects the heart from damage. Given the fact that your ejection fraction is between 40 and 50 would indicate that you might want to do everything needed to protect your heart from further damage.

Have you talked to your doctor regarding your concerns about adding the Beta Blocker? Has he suggested one particular Beta Blocker?

Remember, it is always your right to get a second opinion, but please remember that heart functioning is too important to ignore.

As you are comfortable doing so, will you post an update about your decision?

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