Alternatives to Carveredilol...this stuff is kicking my butt!

[offwego]

Well, been on Carvedilol starting at 6.25 then increasing to 12mg after 2-3 weeks and then to 18.75 for about a month.

The reason my cardiologist prescribed it (along with 325mg of Diovan) is to lower HR while I start a steady aerobic workout schedule..

I had my MR repaired in October 2011...The echo test I had about 2 months ago showed an EF of about 40%...My cardiologist has said that with the medications and exercise he feels it will get back to normal within 6-12 months...and the last checkup3 weeks ago was very good and he said he was certain that if we did an echo now it would already show improvement.

That's all good news but wow...I am just not adjusting well in terms of fatigue with the Carvedilol.. I take it with food at about 1PM and again at about 8pm...I'm tired a lot and I take 10mg of Adderall for energy, etc.

I've been patient giving my body time to adjust but it doesn't seem to be happening...The doctor mentioned he even wanted to increase it again to 25mg 2x a day...ugh!

Of course I will discuss alternatives with him but from the little research I've done, I haven't found many,,

Any experiences adjusting to this med or alternatives are appreciated.

The idea was to get into good aerobic shape and as things improved the plan is to slowly and eventually ween me off or at least lower the dosages.

Thanks for reading..and sorry for complaining as things are going overall very well.

 

[OldManEmu]

Offwego
I was on Carvedilol after my first surgery in 2004 for 3 months and it was not a happy experience. I was put on it after the first few weeks being on Metoprolol.
Carvedilol is an Alpha and Beta-blocker while Metoprolol is a Beta-blocker only. After 3 months on Carvedilol I complained to the cardio that it wasn't compatible with me functioning effectively in my profession. She agreed to return to Metoprolol that I had been on in the first few weeks post surgery. After 12 months my heart had remodelled and the cardio was OK with me discontinuing Metoprolol. Metoprolol wasn't a pleasant experience for the year however it was tolerable and allowed my heart to remodel by slowing the heart rate.
I personally would not agree to go long term on this class of medication if blood pressure control was the sole aim as there are other medications that I have been on that have fewer side effects, beta blockers appear to be a popular form of blood pressure control in the US.
I was on Metoprolol again after my second surgery for three months to slow the heart and allow it to heal. It was once again stopped 3 months post surgery with the cardios OK.

 

[offwego]

Offwego
I was on Carvedilol after my first surgery in 2004 for 3 months and it was not a happy experience. I was put on it after the first few weeks being on Metoprolol.
Carvedilol is an Alpha and Beta-blocker while Metoprolol is a Beta-blocker only. After 3 months on Carvedilol I complained to the cardio that it wasn't compatible with me functioning effectively in my profession. She agreed to return to Metoprolol that I had been on in the first few weeks post surgery. After 12 months my heart had remodelled and the cardio was OK with me discontinuing Metoprolol. Metoprolol wasn't a pleasant experience for the year however it was tolerable and allowed my heart to remodel by slowing the heart rate.
I personally would not agree to go long term on this class of medication if blood pressure control was the sole aim as there are other medications that I have been on that have fewer side effects, beta blockers appear to be a popular form of blood pressure control in the US.
I was on Metoprolol again after my second surgery for three months to slow the heart and allow it to heal. It was once again stopped 3 months post surgery with the cardios OK.

I was on Metropolol to normalize timing between beats (this is a very rough explaination and might even be wrong but it's what I remember..)

The Diovan and the Carvedolol is supposed to slow down heart rate, reduce bp and allow for my heart to get stronger combined with exercise...

I tolerate the Diovan very well and was on it years ago before my first MR repair..

I will make a new appt to see if I can get back on the Metoprolol, although I do understand why he wanted to change to the Carvedolol..

I'm glad to hear it's not just me...this stuff is really making me tired... lackadaisical and very very difficult to get enthusiastic about starting projects...or pushing myself..as you know, it really can be brutal.

Thank you very much for the post, it's very helpful.

 

[offwego]

I put in a call and left a detailed message that I really hope I can switch medications.

It's so hard to know what the right thing to do sometimes is! Like is it my 'imagination'...am i depressed, out of shape or is it the medication and $%#$ it's the medication...It feels like I am taking a sleeping pill twice a day...stimulants don't really even work! I know I shouldn't abuse or even use caffeine or Red Bull or Adderall but they hardly even work!

I do suspect the heart actually IS healing more and maybe faster as part of the meds and exercise...breaths are a bit deeper and I feel pretty good overall but lack of energy and fatigue which are always very difficult to pin down are in my opinion really being either caused or exacerbated by this drug...

I'll update after I speak to my doctor...

 

[AgilityDog]

If you can take the meds 12 hours apart, with food, that may help SOME.
That said, it took me a YEAR to adjust to the carvedilol. I was at 25mgx2 for a while, but it really interfered with my workouts/agility. Talk about hitting a wall!
Now I take 12.5 x 2 and am doing great with the exercise and agility. Sometimes you just CAN'T tolerate the higher doses.
And the higher doses DID NOT increase my EF. I'm at 40-45, and that's all she wrote. It won't go any higher for me.

 

[offwego]

If you can take the meds 12 hours apart, with food, that may help SOME.
That said, it took me a YEAR to adjust to the carvedilol. I was at 25mgx2 for a while, but it really interfered with my workouts/agility. Talk about hitting a wall!
Now I take 12.5 x 2 and am doing great with the exercise and agility. Sometimes you just CAN'T tolerate the higher doses.
And the higher doses DID NOT increase my EF. I'm at 40-45, and that's all she wrote. It won't go any higher for me.

So you feel you have adjusted? How long did it take? I got a return email from a friend who is a cardiologist..He's familiar with my situation and he said he really is a fan of Coreg for to help increase EF...and to talk to my own doctor..I do remember my cardiologist saying there are alternatives...my friend advised not to give up too soon..and I don't want to give up..it's been a solid two months ...no way am I ready or will I be able to tolerate anymore than 18.5...

I am going to take it at 1am (i go to sleep really late) and then at 1pm..both times with food...eventually I will take it earlier and change my sleep schedule this fall.

I really need to sit down with my doctor and go over this as I am taking Adderall 10mg and today took it twice..he knows about it and said there is no direct evidence that it is bad but he preferred I don't take it..I understand why as it's clearly going to raise blood pressure but I really needed it today.

I took it and just got home from the gym after missing 6 days...

Once I meet and get a better idea of what the plan is along with best reasonable expectations, I'll feel a bit better..

Not ever easy starting to work out...really really hard with this medication and at the gym with mostly people half my age and working out like hamsters on a wheel..

 

[offwego]

Still feeling lightheaded on this med and it's getting worse...Got a return call from my cardiologist's nurse, who I much prefer speaking to than him as she's more patient. She told me the doctor wanted me to try reducing the Coreg back to 12.5 mg 2x a day...She said it would probably take 3 days to adjust to the new dosage...and of I still felt fatigue and the other side effects, they doctor probably would want me to reduce again to half that amount.

I asked her about the wrist cuff bp monitor and she confirmed they've tested a few and find them to be not good at all..she advised me to throw it in the garbage...

She confirmed Coreg is the only Alpha Beta blocker but unfortunately not familiar with my case and didn't have much information...she even said how my EF has improved from 35 to 40%...I asked her what she was referring to and she was reading an echo from 2003 before my FIRST MR repair! Wonderful..

I obviously am reducing the Coreg and have read everything I can understand on other medications for this situation...and clearly I understand Coreg is the best one to try, there might be some benefit from the Metropolol that I was on after the surgery with none of these dreaded side effects..

It's so hard to know if I was over reacting and being overly sensitive when clearly the Coreg has really been draining me terribly...I hope I can get off of it completely and that a med such as Metropolol or something else, while maybe not being as good, is good enough!

Had a terrible time with the Coreg today...was walking my dog and would have blacked out if I had not gotten home in time...I think I feel worse on Coreg than I did BEFORE surgery. It's that bad.

Sorry to go on about it...not a happy camper right now...

 

[AgilityDog]

Sorry to be so late replying. We are super busy at the office, and the last thing I do at home is get on the computer.

Yes, I eventually adjusted to the Coreg, and all my other drugs, but it took months and months - a year, basically. I was also healing from extensive OHS and nearly dying, so take that into consideration.

I'd guess as much as 6 months or more to adjust to the intial dose, after my first surgery. After that, I didn't have much trouble "adjusting" to the increased doseage. We decreased dose after second surgery for a while.

Then, After my second surgery we tried to increase the dosage again to improve my EF and maximize benefits, but the 2 side effects of sensitivity to light and inability to sprint for 60 seconds on an agility course were enough, after 2-3 months, for me and my cardio to decide the extra doseage wasn't worth the effort. I didn't show any increase in EF during that period, anyway.

 

[offwego]

Thanks Laurie,

That's good information and again, I appreciate it. I just spoke to the nurse again, she called me to say the doctor wants to see me in a week or two...I confirmed I am going back to 12.5mg 2x a day...and if I still feel light headed too much, I am going to cut that dose in half again...I'm not asking, I'm telling..lol...But seriously..I can't deal with the feeling lightheaded...I can suffer through the fatigue I guess if I have to...She also said the doctor said not to take Adderall anymore...that's what I get for complaining too much! arghh..but a medication like Adderall is clearly counter intuitive to be taking for someone with heart issues...

I'm down on myself a bit and feel by not getting echos for a year or so that I wonder if I did do damage to my heart...I try not to think about it but it does obviously upset me...

The nurse confirmed that even if we lower the dose, the plan is after adjusting to it, to again, slowly increase it...

I guess I am just going to have to go with the flow and maybe (hopefully) adjust to the medication...and go to the gym..

 

[Eva]

Offwego,

what is your heart rate? What is your BP. if you mentioned this before, I must have not noticed it!

I am sure you are aware that Adderall increases the HR and elevates BP. Your dose is small, yet you may want to check your BP and HR before taking Adderall to compare. Red Bull was a disaster to me...it increased my PVCs and my HR. So does coffe and soda...not well tolerated by my system.

My HR was between 85-95 after my surgery. It is only now that it went down to the 70s at resting.

Keep us posted.

 

[offwego]

Offwego,

what is your heart rate? What is your BP. if you mentioned this before, I must have not noticed it!

I am sure you are aware that Adderall increases the HR and elevates BP. Your dose is small, yet you may want to check your BP and HR before taking Adderall to compare. Red Bull was a disaster to me...it increased my PVCs and my HR. So does coffe and soda...not well tolerated by my system.

My HR was between 85-95 after my surgery. It is only now that it went down to the 70s at resting.

Keep us posted.

It's been about two weeks since reducing the Coreg to 12.5 milligrams and I no longer feel faint or light headed (thank God!)...The fatigue is lessened by at least 50% as well...

I need to see my cardiologist soon but things are settled down a bit..

I know he eventually might want me to build back up the Coreg...but I'm not thinking about it that much now.

His nurse said that he said not to take the Adderall but that's what you get for continuing to ask! I'm taking it anyway..one time a day..I had asked him in the past a few times and he specifically said there was no direct evidence of it being bad...I certainly understand that it does raise BP...I need better BP monitor..I had an old cuff one that was not accurate and bought a wrist one that's ok..but don't have much confidence in it either. Oddly I think it is accurate when BP is normal and yet it seems to 'overreact' to it maybe being a little higher...It's really disturbing to see readings of 150/100! I just know it's wrong..and yet it is disturbing even if i know it's wrong!

I think my bp is pretty good now..it's always lower at the doctors office...I just took it now and it's 110/68 with HR of 82..

I don't drink much coffee (maybe 1/2 to one cup at most a day), rarely have soda and Red Bull...a 8.5 oz can..probably 5x a week..I was drinking more of it when I was on 18.25 of Coreg!

I have been derelict in working out but went yesterday and am going to try for 3-4 times this week..it's obviously not easy as I don't have any good consistant track record other than years ago..

I guess another Echo wil make me feel better (GULP) or worse, depending on results...The last echo that showed lower EF really upset me..IN fact in some ways I was rocked by the news and the experience of Coreg more than going back for a second repair...That was defined and I was optimistic..

Now I am probably over reacting to the idea that the EF was lower than expected (around 40%) but for all I know, if it were 55%, I would not feel it...IN fact that was pretty much what the cardiologist was suggesting.

I am thinking less about my heart at least since I reduced the Coreg! The fatigue and the lightheadedness really made me anxious, to say the least..

Hoping that things are stabilizing and I have the feeling my heart is actually continuing to improve..

thank you for reading and your post!

 

[Rick]

I used to drink a lot of caffeine. It really does increase BP and HR and is generally not good for you. I dont know what Aderall is but if I were in your shoes, I would (i) not take caffeine or Adderal anymore....ever again; (ii) take the Coreg at a time where it may help me regulate sleep if it causes you to be tired and you are sleeping late; and (iii) do what the MD says, not what I feel like doing --- sorry to be so blunt as I am only trying to be helpful. I would also do the light exercise...it will help get you feeling better in general. Finally, I would ask but I think reducing sodium also helps control BP and may look into doing that.

Best of luck to you, Rick

 

[scott.eitman]

I believe I felt very similar on Metroprolol, and worked with my Cardio to stop taking that.

About a year later, which is about 3 months ago, in order to keep my HR max below 170 while bicyling, I asked my cardio about taking a BB low dose. I am taking Carvedilol, 3.125 MG twice daily. This seems to be working for me, but I do still have that not feeling like do anything feeling sometimes. However, I believe this feeling is associated with being physically tired. I rode my bicycle 50 miles on Sunday and did not feel like doing much Sunday and Monday. So far so good.

Stay well,
Scott