Titration with carvedilol and gut feeling

"Titration: If tolerated, increase dosage to 6.25, 12.5, and 25 mg orally twice a day over successive intervals of at least 2 weeks. Maximum dose: 25 mg orally twice a day in patients weighing 85 kg or less and 50 mg orally twice a day in patients weighing 85 kg or greater.May 8, 2023"

This is the information about carvedilol on Drugs.com. For quite some time, I have been completely against the idea of taking more than 12.5mg twice daily. I found a study that indicated that the majority of patients tolerate that amount fairly well, but when it it doubled, they tend to suffer from more side effects. That stuck in my head... clearly... because here I am talking about it again. I have been taking 12.5mg twice daily for 10 days now and I felt fine initially, but as of yesterday, I'm back to feeling worn out and slightly nauseated.  I'm not sure if that will pass or not. But I'm hoping to be able to at least take this amount, it seems to be the magic number for carvedilol. 

My gut tells me not to take more. At least that's the way it feels. But I've also been infiltrated with negative information that has definitly swayed my opinion. I'm relatively young at 58 years old, my kidneys, lungs, and all other organs are holding up well. From what I have researched, higher doses of carvedilol are responsible for kidney and liver damage later on, something I'd like to avoid at all costs. 

My problem is, the CRT-D implant was supposed to raise my EF and in 6 months it's still the same. So my doctors want to up my medications to attempt to raise that number. However, I would think that taking even some carvedilol over a period of a year and not seeing a difference, that taking even more of it won't really help either. I see it doing more harm than good. I think that identifying my stress triggers and handling that aspect of my life will help most of all, but obviously, I could be wrong. I don't have time to make an educated guess, if I go another year without improving my EF by a substantial amount, I feel as though I will only have a short time left after that. I mean, how long can you really LIVE with an EF of 16? 

Part of my frustration is I hate being nauseous. I lose my appetite, get grumpy, sullen, and even depressed. I forgot how lovely it was to NOT feel nauseous for about a week before it set in again yesterday. And anyone that has read some of my comments on another person's post about THC knows that I use a tiny amount almost every day to combat the nausea. This last week was so nice because I didn't need any. Trust me when I say, I'd rather not have to take cannabis at all, but it sure has helped me a lot over the last several years. 

I guess I just needed to vent again, but if anyone has any advice, I'd gladly read it. Thanks! 


11 Comments

Pharmacist

by Lavender - 2024-01-21 21:29:28

Please talk to your pharmacist about your concerns. I know your dr wouldn't prescribe anything that wasn't safe. You seem to need more professional input and not just google information. You might be able to take zofran for the nausea. 

My pharmacist... oh boy

by R2D2 - 2024-01-21 21:56:25

I live in a small community with only one drug store. My pharmacist is basically useless. He should have retired 10 years ago and hasn't been able to give me any information on the drugs I take aside from "you'll be fine." Yeah.... I know. So what I do is research multiple websites to get an accurate picture as well as reading a lot of reviews on the drug. Each review site probably has some sort of bias, so I gather several to get a rounded idea. 

My doctors are only concerned with one thing at this point, titrating my meds to the highest dose I can tolerate. But tolerating a drug isn't fun on any level. What kind of quality of life is that to just barely tolerate your meds? I'm being treated like a healthy person with some mild issues, when in all actuality, I feel like a ticking time bomb. Eventually the rest of my body will start shutting down and I'll end up back in the hospital. But until then, I've been instructed to wait another year to see my doctor. A lot can happen in a year.... 

I know you're trying to be realistic and helpful Lavender, but through this whole journey of heart failure, I don't feel as though any of my doctors are listening to ME. They just textbook treat me, send me out the door, and wait for me to degrade more so they can do more surgery or treatments. As long as I'm not "sick", I'm ignored. 

Modern medicine does not allow for natural health treatments and preventative care. In fact, it's discouraged. It might actually work and they'd be out of jobs. You can tell, I have NO faith in doctors or hospitals. They have been lying to me for years. 

Do you know what my doctor said 10 years ago when I was diagnosed with heart failure? He said my left bundle branch block was insignificant and something I shouldn't worry about. And do you know what I've learned? It was exactly THAT condition, my LBBB that caused my heart to weaken and swell. It's been on every EKG I've had, and I asked about it multiple times, and always told it wasn't something to be concerned about. Why? A part of my heart wasn't functioning... but no big deal right? LOL! 

I feel like I'm on my own with this diagnosis, I always have. Like a mother taking care of her child, I'm a bear when it comes to taking care of myself. I am probably a doctor's worse nightmare... someone who researches and has an opinion. 

I'm just rambling now... feeling down I guess, but I've been up for several days and hopefully a good night's sleep will remedy my mood. 

Drugs

by Lavender - 2024-01-21 22:28:49

I always get good advice from my pharmacist. I trust her. She's very informative. Call a pharmacy in the next town. 
 

I also have had LBBB since it was accidentally discovered in 2010. I was always told it was no big deal. I was never told that heart block is progressive. Of course my LBBB had AV node block added in another 11years. 
 

I get it-your EF is low and you already have had a shock. I think, given your distrust of your medical care, that going a distance for another opinion would be beneficial. I know folks who don't live anywhere near Cleveland Clinic who go there for top notch care. One guy I know went across country to seek cancer treatment at a more advanced facility. 
 

You simply can't continue to have such ups and downs with your feelings on the situation in which you find yourself. Seek help from a completely different source than your present team. I do believe they are trying to increase your longevity as well as quality of life. I once had to take a medication that caused extreme nausea. They co-prescribed zofran so I could tolerate the medication. It worked. 

Disagree strongly

by Lavender - 2024-01-21 22:32:55

You said, "Modern medicine does not allow for natural health treatments and preventative care. In fact, it's discouraged. It might actually work and they'd be out of jobs. "

 I strongly disagree. Modern medicine greatly encourages preventative care. No one discourages anything beneficial. The medical profession will never be out of jobs and doesn't need your case to keep working. Just see how long it takes to get appointments. 

Lavender

by R2D2 - 2024-01-21 23:54:31

Maybe it's just the medical people in Northern Idaho, or more accurately within a 100 mile radius from where I live. Plus, medicaid patients are not afforded the same thorough treatment that other insured people are. Apparently there is only so much they can charge medicaid for their services, so I only get a few minutes with my doctors before they basically cut me off. I have friends that worked in hospitals around  here and they quit due to those types of issues. 

There are many local medicaid patients being treated the same way, we get plenty of expensive tests and surgeries, but when it comes to ongoing treatments for chronic illness, they just medicate you and send you on your way. 

The very doctor that diagnosed my heart failure literally let my dad die 6 years ago, instead of starting him out gradually on HF medications, he loaded him with several all at once and in a month, my dad was gone. The meds made him so sick, he couldn't eat or drink. 

I don't trust doctors, and I don't think I ever will. 

Gut feeling

by Gemita - 2024-01-22 03:44:54

Janene, trust your gut feeling.  Whatever you do, it must feel right for you.  I listen to what my body is telling me and I know you do too.  My opinion since you have asked is that it is surely better to be able to take “some” of the medication according to bowel tolerance, than to stop taking it altogether.  Carvedilol titration instructions clearly state:  “if tolerated, increase dosage . . . “  If not tolerated or you have serious doubts, then I would personally follow your gut feeling and continue on the lower dose which after all your doctor has also recommended.  Don’t forget, you have the protection of your CRT-D as well.  You can do without the extra stress of introducing even more medication into your body.

You have heart failure and your doctors are using tried and tested medication to help ease your symptoms, but of course it is not always the best course for everyone with heart failure, is it?   There comes a time when more is not necessarily always best, when “more” might tip the balance and cause more harm than good.  This is when things get really complicated.  

There is no magic solution for heart failure.  Most of us want to live a quality of life for as long as we can.  I am watching my husband doing just this on minimal meds since too many meds in the elderly may cause additional problems related to interactions with other meds, lowering of blood pressure causing falls and injury, drug toxicity.  It is so complicated to get the balance just right, but I listen to the patient, watch his symptoms and act whenever I need to.  It is working for both of us at the moment, but I know that health care professionals would ideally want him to be on other meds too, to get those blood results within range but would this improve his quality of life I wonder.

How long can you live with an ejection fraction of 16%?  Who really knows but I have seen some folks survive and live well with a low ejection fraction.  I think what you should be focussing on is not your EF but how you feel.  Aim for improvement in your general health.  If you feel well, assume you are making progress.  The CRT will be helping to keep your ventricles working in synchrony and this should help to improve your ejection fraction which can take up to, and even beyond, a year.  After all, your EF hasn’t deteriorated either, has it?  Of course CRT won't help to improve EF in all patients, but it should help to improve quality of life from synchronised pacing and the defibrillator part should help to prevent sudden cardiac death in the event of a malignant arrhythmia.

Please forgive me if I don’t comment on THC.  I have mixed feelings about the safety of taking this, but I understand completely that you believe it is helping and I will not go against your beliefs.  I feel your current difficulties stem from the fact that you didn’t get help early enough for your worsening heart failure and it will therefore take longer before you can expect to see an improvement.  Nonetheless it is never too late and you are getting the help you need now.  Never stop believing that you can make a difference and continue to follow your gut instinct.  It won’t let you down

Gut feelings

by Selwyn - 2024-01-22 10:06:51

Sadly, we are in the' chicken and the egg' scenario when it comes to nausea and heart failure.

https://heart-failure.net/clinical/nausea-vomiting

Sometimes individual experience  about gut feelings  is  not everything  as it seems.

"Part of my frustration is I hate being nauseous. I lose my appetite, get grumpy, sullen, and even depressed." Our mood also reflects on our gut. Nausea and loss of appetite being both a common  symptom of anxiety and of depression. 

Food for thought! 

Finding someone with sufficient expertise, to look at you as a person (holistically), and to try to tease out the cause(s) of your nausea, is something you should consider. 

We know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don't know we don't know. 

Sometimes we need help from those that think they know. Of course, they don't know everything.  Such is human knowledge and behaviour.

 

 

A Suggestion Maybe

by benedeni - 2024-01-22 10:32:54

R2D2,

Prior to now I have not weighed in on your posts.  You have a much more serious condition than I have and my heart goes out to you regarding all your issues, struggles and concerns.  

I do know a bit about the area where you live, however.  I used to live just 54 miles or so from you in White Bird.  A Beautiful place for sure, but very isolated.  My nearest PCP was in Grangeville.  He was wonderful but I needed to travel farther for anything serious.  I had other health issues at the time as my CHB was not discovered until 2019.  But I did have two mini and one substantial stroke plus breast cancer while living there.  I can tell you that if you can get to Coeur d'Alene you will find wonderful, caring health care.  And of course there is Spokane which boasts of excellent cardiology care.  As I mentioned, I did not need a cardiologist or an EP at that time.  I realize it's a 3 hour drive and that is a lot, but perhaps to get a 2nd opinion from a larger facility would be worth the drive.  

I realize it's winter and traveling is also an issue you would have to deal with, but why not do some research and see what you think? I also had my cancer surgery in Lewiston, and though a smaller facility, I received excellent care. That would be much closer to you.

I do so wish you well and my thoughts and prayers are with you.

Just another thought..

by USMC-Pacer - 2024-01-22 16:59:13

Are you on a statin?

I just read recently that statins can cause cardiomyopathy mostly in long term use. Weird, my cardiologist never mentioned that to me. I've been on a statin longer that I can remember. However, my EF issues started right after they upped the dose without even telling me. I happened to have noticed the pill got much bigger. I took it...two years later at my next echo, was my dropped EF.. interesting.. I just stopped my statin for my upcoming echo in April so we'll see what happens...

Here's some info:

https://pubmed.ncbi.nlm.nih.gov/31496499/

And

by Lavender - 2024-01-22 18:37:06

Back to a suggestion given early on to you-seek CBT-cognitive behavioral therapy! It's also mentioned as a nausea treatment in Selwyn's link!

Benedini

by R2D2 - 2024-01-22 20:45:47

Just so you know, my cardiologist and pacemaker guy are both from Couer d' Alene, Kootenai Heart Clinics. They travel to Lewiston to see me so I don't have to drive so far. Most of my experiences before last year were with other doctors and I didn't have any medical coverage so I couldn't afford treatment and didn't know I was getting so bad until the fall of 2022 when I was instructed by my primary care doctor that I needed to retire and get on disability or I would only have maybe a year to live. 

So yes, I have gotten doctors from out of the area because even my PCP knew that the local care I could get was not sufficient at all. Luckily I qualified quickly for help which I'm eternally grateful for... I'm just sad that I didn't know how bad it was getting, my long term boyfriend of more than 10 years would have paid for this device a long time ago if we would have known. But no one acted like it was any big deal. 

 

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