When you finally allow yourself to take more meds...

A lot of people in this club have been following my journey for the last several months, and you are the ones who know the literal battle I've had with not wanting to titrate up my meds. Carvedilol to be precise. But lately, I've had a change of heart... no pun intended. 

I realized something rather important. No... I'm not kean on the idea of taking more Carvedilol, I'm afraid of kidney damage and more side effects. However... I had sort of an epiphany the other day and decided I'm going about this the wrong way. 

Back in the 90's there was a movie called "Awakenings" with Robin Williams. A true story about people who got polio I think in the 20's - 30's and instead of recovering, they gradually went into these weird coma like states. They had their eyes open and could do a limited amount of things, but for the most part, they were vegetables. That is until a doctor came along and discovered that they all had one thing in common, they had certain reflexes they could utilize and prove that they were "aware" of what was going on around them. Long story short (it's a good movie) was the doctor started them all on medication that was designed for Parkinson's disease, but he gave them about 100 times more than that. And... it worked. They all "woke up"... granted, eventually the medication failed and they all returned to their former states. 

Now, that sounds depressing, but it taught me something. Maybe the reason my Carvedilol isn't doing much is because I need more. Yes, I'm scared to take more, but I'm scared to keep staying at the same level I am now. I need a boost. Maybe the Carvedilol will drastically improve my condition, coupled with my CRT-D and other meds. Maybe. And that maybe is worth a shot. Let's face it... what have I got to lose? 

If taking more is really not feasible and causes more health issues than it is worth, I can always take less again. So I'm gonna brave up and go for another boost in doseage. The next level is 25mg twice daily. I think that's the max for my weight and age and condition. Before my epiphany, all I thought about was the down side of taking more. But I realized that sometimes with medication, you just need a little more for it to work at it's best. We shall see.... 

5 Comments

Carvedilol...

by USMC-Pacer - 2024-02-21 01:35:30

... can help. This is in relation to your other topic below. If you have Afib, PVCs, or any other arrythmias, they can create a burden that will decrease your CRT response. Carvedilol can help to minimize, and in some cases eliminate them. If you get your report, your CRT percentage is documented there, or at least it is on mine. I can't assume that they are the same.. As was said below too, I'm not harping on numbers, but just trying to understand in a minimal sense what is happening. Back in July, my carvedilol was also doubled to prevent PVCs which increased my CRT response from 93 to 99.8. <--those are about the only numbers on the entire report that make any sense to me.

You know best

by Penguin - 2024-02-21 04:04:23

R2D2, I agree with a lot of what Angry Sparrow says and I totally understand your own previous point of view, fears and initial reaction to the increase in dose. You’ve reflected and thought this through and that’s wise. I don’t know if you’re right or wrong to accept an increase in dose and have had no personal experience of that drug so I can’t offer any advice from personal experience here.  I hope that you can take this at your own pace and keep control of what feels comfortable and what doesn’t.

I’d ask for blood / urine tests to monitor your kidney reaction and keep an eye out for symptoms such as frothy urine, breath changes and any other symptoms which suggest that your kidneys may not be coping and act on them immediately. 

I hope the drug helps, I really do.

 I’ve also noted what other people in your position have recently posted about waiting up to 12 months to see a result after going into heart failure with a low EF% and commencing treatment.  They would be good people to keep in touch with.  Peers who have taken similar drug combinations and doses know the beast and can be incredibly helpful sources of information and support.  

Best Wishes x

A good decision

by Gemita - 2024-02-21 05:09:32

Janene,

What would I do in your shoes?  I would say to myself, I need to do something to “try” to help recover my EF (ejection fraction) if it is stubbornly stuck at 16% because of the real dangers of leaving it there.  The dangers being, it slides down further or any little stress that you encounter, triggers another dangerous arrhythmia, then another shock.  Neither of these results would help you either. 

You seem to be tolerating the dosage you are on at the moment and that is an extremely good sign in my experience that your body is coping well with the ingredients in the med, so a dose increase hopefully should not produce immediate intolerable symptoms.  

You could perhaps agree to trial the higher dosage for a period, to see how you will manage?  I don’t see any immediate harm in this course of action, especially since you are tolerant of the med at the current dosage.  Also I would want assurance from your doctors that they will agree to monitor your bloods more carefully for any signs of toxicity or changes in organ function.  Several organs may be involved in clearance of certain meds and you want to make sure that these vital organs can continue to function appropriately and that dangerous levels of the med do not build up in your body.

So as long as you are being monitored, you should remain safe for long enough to see whether your EF and percentage of CRT pacing show any signs of improvement.  Any improvement from the increased dosage, however slight, could just make a difference to the final outcome or at least to your current quality of life, and that has to be worth a try?

rock and a hard place

by Tracey_E - 2024-02-21 08:40:29

 I think we all avoid meds if at all possible, and worry about the side effects. It's important to be educated and advocate for ourselves, but there comes a time when we need to trust the doctor and give it a try. Good luck on the new dose.

Glad you will give it a chance

by Grateful Heart - 2024-02-21 22:53:55

I did not need any drugs until age 50...when my heart troubles began.  I was diagnosed with  CHF, Cardiomyopathy, LBBB, SSS and enlarged heart in 2008. My EF was 24%.and my CRT-D was implanted.  My EF increased to 55% within the first year and my heart no longer enlarged..  

One of the drugs my doctor presribed was Carvedilol.  I started off with the minimum and was increased eventually to 6.25mg and then 12.5mg twice a day.  At first I didn't tolerate the higher dosage well so my cardio stopped it for a couple of months to give my body a rest.  He then increased it again to 12.5mg.  The 2nd time was fine for me but of course we are all different.  My doctor wanted to try it again although I was skeptical but he said it was a good drug so I gave it another chance.

Your cardio would/ should check your bloodwork regularly to stay on top of any concerns.  I just went for more bloodwork today in fact.

I think you made a wise decision.  You and your doctor can always reverse it if need be.

Grateful Heart

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