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'new' medications in DCM: Torsemide, Dronedarone, Eplerenone
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'new' medications in DCM: Torsemide, Dronedarone, Eplerenone

Hi,I am 31 years old, familal DCM since 2001, defect in LMNA A/C (Glu161Lys), with single wire ICD, being tested soon to find out if a double wire would help me. Great tendency to bigeminy, trigeminy and some v-tach. Changed therapy 15 months ago after after being fired twice:from 25 mg BID of carvedilol to 40 mg three times a day of sotalol.Now it goes better with arrhytmias, it goes a bit worse with energy level
4 quick answers:
1)I switched to Torsemide instead of Furosemide, since it looked to me I did not adsorb sometimes Furosemide.I found on me that 25 mg of Furosemide=10 mg of Torsemide,does it look right to you?Do you agree with my choice or I had to stay stuck to Furosemide?I tend to retain fluid in belly,Torsemide should be more effective on getting rid of fluid in belly,right?
2)Can not take Amiodarone because of side effects on liver. Could I try Dronedarone,is that less toxic on liver and as effective as Amiodarone?Arrhytmias seem in this phase the main concern (EF is aroun 30-35% and VO2max not that bad)
3)Eplerone instead of Spironolactone?I take the second,is it worth switching to the first one?
4)I know there is no response but,given my defect LMNA A/C (Glu161Lys),is there anything I can do more(adjusting therapy or whatever) that will save me as long as possible from hear transplant,where the most of DCM patients in my family arrivied in less the 7 years?Is it possible my heart will last longer?"Statistically"my story seems already written. Sometimes I think: the faster worsening the better.Tough to leave like this at this age.I'll do my best,though
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Hi Giorg,

1)I switched to Torsemide instead of Furosemide, since it looked to me I did not adsorb sometimes Furosemide.I found on me that 25 mg of Furosemide=10 mg of Torsemide,does it look right to you?Do you agree with my choice or I had to stay stuck to Furosemide?I tend to retain fluid in belly,Torsemide should be more effective on getting rid of fluid in belly,right?

There are two big differences 1. cost, 2. bioavailability.  The bioavailability difference between lasix and torsemide is usually overcome by increasing the dose of lasix (25 mg is a pretty low dose).  Go with what works.  If you are paying out of pocket, I would increase the dose of lasix first up to 200 mg.  Typically if escalating the dose of lasix doesn't work, a second diuretic is added that works by a different mechanism to support the lasix (zaroxoyln or metolazone).  If  you feel better with the torsemide and cost isn't an issue, by all means continue.


2)Can not take Amiodarone because of side effects on liver. Could I try Dronedarone,is that less toxic on liver and as effective as Amiodarone?Arrhytmias seem in this phase the main concern (EF is aroun 30-35% and VO2max not that bad)


I have never used Dronedarone.  If the sotalol is working but making you more fatigued, talk to your doctor about decreasing the sotalol and restarting a beta blocker.  Dofetilide is sometimes used to treat VT as well.

3)Eplerone instead of Spironolactone?I take the second,is it worth switching to the first one?

I only use eplerone if there is painful enlargement of the breasts from spironolactone.  It is a very rare case that I am not using spironolactone.

4)I know there is no response but,given my defect LMNA A/C (Glu161Lys),is there anything I can do more(adjusting therapy or whatever) that will save me as long as possible from hear transplant,where the most of DCM patients in my family arrivied in less the 7 years?Is it possible my heart will last longer?

There is no way to know for sure.  The best thing for you to do is make sure you are in contact with the best heart failure doctors in your area and you should at atleast meet with a transplant team if it looks like you are heading in that direction.  There isn't much else besides medical therapy.

Thanks for posting and good luck.
6 Comments
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38309_tn?1270893703
Giorg,

When I hear stories like yours, I'm humbled. You have a great attitude. I hope you're continuing to exercise. Twelve years ago, my father's friend was told that he needed a heart transplant. He put it out of his mind, became more active in his community and entered a cardiac rehab program.  

Today his heart function has improved to the point where he's no longer on the list for transplants and he plays a mean game of singles. He has become a local celebrity and lectures to hospitals frequently.

The key take away in his story is that if he would've "accepted" the odds, he probably wouldn't be here today.

Many blessings,
Carolina

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Thank you doctor, and thank you Caroline.
Caroline, odds are that laminopathies like mine(cardiomyopathy with defect in LMNA A/C gene) go worse over time. Actually it is something more then odds, it is clinical evidence on most of the patients. The reason why they go worse faster then most of other types of dilated cardiomyopathy is still unclear.
But I will fight. I trust my cardiologists and I have always been very religious. Also I would really like to show my family that attitude, prayers, efforts to live healthy can make the difference in a degenerative disease like mine. I want to be a hope for whom in my family will get the disease after me.
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Giorg,

I'm so sorry to hear of your ill health.  I hope it doesn't have to come down to a transplant for you down the road.  I wish you the best of luck.  I think your attitude towards your heart problems is commendable and inspiring.  Good for you and don't lose faith either. Prayer does work!  (:  Best wishes!
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Avatar_n_tn
Hi Giorg:

I have had 'bad' dilated cardiomyopathy and when it was first diagnosed in 97, (age 42) I was nearly dead. My EF was 31% and I had an aortic valve and an ICD implanted. I struggled for a long time to come away from the 'edge of the cliff'..

You should know about 'Co-enzyme Q10' which along with vitamins and nutrient supplements helped get me heading in the right direction... CO-Q10 helps the heart and I now take a maintainance dose of 30mg daily and it doesnt clash with my meds at that dose. Please check out this site (http://www.DrSinatra.com) as he turned me on to CO-Q10 and was responsible for giving me insight to nutrients and the heart.

To solve my severe depression, I walked a little bit everyday to help my heart get stronger.. Soon I could do more things...

You have a great attitude and keep focused on winning... We all can do it if we keep trying!!
regards,
Tom/7Deuceman
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I know very well CoQ10, in my genetic DCM does not help. As other supplements do not help me: L-carnitine for instance, that works in some dilated cardiomyopahty (with carnitine deficiency), in me is like water. I tried everything.
Exercise sure does help. After 5 years I am still a class NYHA II mostly due to exercise (and ACE,betablockers,diuretics and diet). But a decline, sooner ol later, with my genetic defect, seems inevitable. At least with the current therapies. We will see. For sure attitude can delay (or accelerate....if I get depressed) decline: the mind is so powerful.
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