Latest Heart Failure Medication Recommendations

I am 34 yrs old and have heart failure (EF 35-40%) and ventricular arrhythmias (post ablation and left sympathetic denervation surgery).  I have a CRT-D (my 5th defibrillator/pacemaker) and complete heart block, with a history of clots (PE).  I was taking carvedilol, lisinopril and warafin for several years.

Last year, I went to Mayo Clinic Rochester for a second opinion and have since locally transfered my EP and Heart Failure cardiologist team to the local academic hospital.  Both Mayo and my local academic hospital have recommended medication changes to align me with the latest medical research results.  I wanted others to know about these, in case they dont have such opportunities to be seen at an academic medical facility that follows guidelines and research closely.  

1) Blood Thinner: Switched from warafin to eliquis, and no longer have to test my pt/inr at home by pricking my finger every couple weeks, and a salad or drink of alcholol no longer effects my blood thinner!

2) Heart Failure: Stayed on carvedilol, stopped lisinopril, added entrusto and spironolactone.  Those transitions all went well.  And now an even more recent research study recommends farxiga, which i will begin next month.  These four classes of drugs for heart failure patients have proven to reduce hospitalization and death.

3) Arrhythmias: Due to 2 recent defib shocks from Vtach in July which then threw me into afib for a few days, I have also added sotalol, potassium and magnesium supplements.  No shocks since.

*Note that eliquis, entrusto, and farxiga are new drugs, and are very expensive because they dont have generic alternatives yet.  Although due to all my medical expenses each year, I typically hit my out of pocket expenses, which will make the individual prescription cost not really matter in the picture of the full year.

It is honestly a lot of prescriptions to manage, but after seeking two second opinions from reputable hospitals, I feel like I am on the best course of treatment now.

Best of Luck to you all!


7 Comments

Good šŸ˜Œ luck

by Ms.Cryer - 2020-10-30 01:21:57

I'm glad šŸ™‚ you're doing ok. I'm also glad you found some meds that are working . Everything will work out. Best of luck to you as well. It's not easy but we're doing and awesome šŸ‘šŸ¼ job. 

Medication recommendations for heart failure

by Gemita - 2020-10-30 05:32:08

Katelyn, thank you so much for sharing this valuable information.  I too wish you well and hope that this cocktail of meds works wonders for you.  It is always wise to keep up with the latest research and I can see you are doing everything you can to improve your Ejection Fraction and your quality of life.

Yes this end too we are working hard with all our meds, trying to keep a happy balance between better health and controlling side effects.  We think we have got the balance about right now too.  

Can you share the potassium/magnesium supplement you are on?  There was a post recently about this and in the past my husband has had to have supplementation of these minerals when he collapsed (in Atrial Fibrillation) from these electrolyte disturbances.  I am so glad Sotalol and these supplements are helping to calm your shocks.  That must be such a relief

potassium/magnesium supplement

by Katelyn - 2020-10-30 11:56:48

Thanks for the kind notes Ms Cryer and Gemita, wishing you and your families well wishes.

Gemita, I am 5'8"/135lbs and take 400 mg magnesium daily and potassium (CL SR MC TB) 20MEQ.

Heart Failure Drugs

by AgentX86 - 2020-10-30 15:57:14

I don't know a lot about heart failure drugs but I do have some bit of experience with everything but Entresto and and spironolactone.  It appears that the latter is just a dieuretic.  The only issue there is your kidneys.  You have to be very careful there.

The others, like I said, i have a lot of experience with.  Eliquis is incredibly expensive but is far safer than any other, particularly in your case.  I wouldn't risk warfarin at all and the other NOACs aren't as safe but marginally less so.

Sotalol is a pretty agressive antiarrhythmic drug.  It is powerful stuff but like all of the antiarrhythmics, is toxic.  It's only recently that a three-day hospitalization requirement (like tikosyn3 still requires) was lifted for its use. Antiarrhythnmics are toxic in about their ranking of effectiveness.  Ameoderone is nasty stuff but is very effective.  Ameroderone damaged my thyroid after only a few months.  Fortunately it recovered after a year or so.

Next is Tikosyn.  The fact that it requires a three day hospitalization to start it tells you something.  I was about to go on it, after trying all else, but the need for a pacemaker intervened.

Which brings us to Sotalol.  I was on it for about nine months, IIRC.  It damaged my SI node such that I needed a pacemaker.  Since you already have a pacemaker, this doesn't matter much but it can do a lot more damage than that.  Be careful with any of these drugs and watch for side effects.

Potassium and magnesium are critical to heart health (always hated that term).  Actually, sodium is in there too but we all get way too much of that.  If your blood has been tested and you're low on either one, it's a must.  Too much potassium is just as dangerous as too little so treat it as such and listen to your doctors.  If they told you to supliment it, they'll be watching.  Magnesium is a little different.  Too little is very bad but too much is very difficult to do.  It tends to be self limiting. Think: Milk of Magnesia and you'll get the idea. You want a form of magnesium that will be absorbed into the body.  That means NOT magnesium-oxide.  That's good for sunburned noses but not as a suppliment.  You need an organic form of magnesium (tartrate, or somesuch).  I get mine from Amazon. I had to try a few before I found one that worked (got rid of my PVCs and leg cramps).

IMO, you've been told right.  Eliquis is very expensive and for those on Medicare, it'll put you in the "donut hole" for sure but it' beats a hemorrhagic stroke.  The only thing I'd question is the sotalol but it's probably the lesser of evils too.

Magnesium

by Annie 1 - 2020-10-31 16:54:55

Agentx86, which magnesium did you select?

Magnesium

by AgentX86 - 2020-10-31 20:09:20

Magnesium Glycinate has worked the best for me.  Magnesium Orotate didn't work so well.  YMMV

This is what I've been using:

<https://www.amazon.com/gp/product/B01IU9JBW0/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1>

 

Point

by ROBO Pop - 2020-11-03 01:39:14

Forgive me, but I don't see your point. We are all different with different medical conditions. There are many many drugs on the market for heart patients and it's up to my medical team to choose the best combination for my needs.

 

Yes we adjust them as necessary but I would never go in and ask for a drug just because it might be new on the market, or some miracle cure like Entresto for example. That's why drug companies advertise their products so heavily on TV, because they make a lot of money from patients insisting on the latest and greatest.

I was one of the first in the US to use Entresto when it was approved in the US. first if you read the studies and literature you'll find indeed it can be a miracle cure but only for those it works on which their studies showed was a mere 20% of patients. Second I suffered a potentially fatal side effect, angio edema. 

All I'm saying is I think pushing drugs because they work for you isn't the best choice for support sites like this, and it can have horrible consequences for the unfortunate few

 

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Hi, I am 47 and have had a pacemaker for 7 months and IĀ’m doing great with it.