Carvidolol??

[Bazooka_IHSS]

I just recently started seeing a new cardiologist. In my first visit we went over what symptoms I was having. shortness of breath, Chest pain after eating large or unhealthy meals, stress induced chest/left arm pain, slight swelling of feet, headaches, minor short term memory issues. Well anyway as I left he pats me on the back and says "don't worry we'll get you feeling better" I came back for a echo and then a couple weeks later seen the nurse practitioner for the results. After getting chewed out about my weight and telling me to get it under control (5'11'' 300lbs I agree! WAY out of control!) they tell me they want to change my meds. I am currently taking Verapamil ER 240 mg 1x day, Atenolol 50mg 1x day, Aspirin 81mg 1x day. They decided they wanted me to try Carvidolol 6.25mg 2x day for a month and then come back in to see them. If I tolerate it well they said they would bump up the dose. I was told I'm showing early signs of heart failure but its not bad enough to classify as heart failure and want to get me started on the meds early. The nurse practitioner said she worked at a heart failure clinic for a long time and seen great results with the drug and seen with her own eyes patients ejection fraction improve with the drug. She referred to it as a amazing drug. I'm having a hard time trusting my new cardiologist after finding this site. He is not a HCM specialist. What has me even more worried is when I talked to Lisa she said that was not a drug normally given to HCM patients. Just looking for a little feedback I'm trying to get a appointment setup with the HCM clinic and Dr. Ashley at Stanford. I don't know if I should stay on the drugs I have been taking or go ahead and start taking the carvidolol. They also told me to stop taking one of my meds when I start the carvidolol but I forgot which one they told me to stop. below is what they wrote down from the echo report. I know a few pieces of important info are missing..

LV Diastolic 58mm
LV systolic 41mm
IV septal thickness 24mm
LV posterior wall 16mm
% fractional shortening 21%
LA demension 57mm
aortic root dimension 36mm
aortic valve 23
EF 50%
mild mild regurgitation

[Cynaburst]

As Lisa said, this is not a drug that is normally used with HCM. It is usually reserved for those with end stage HCM....My Dad took it towards the end of his life when he was having many issues with fluid retention and diminishing ejection fraction.

If it were me, I would personally wait to make any changes until I got to Stanford and reviewed my case with Dr. Ashley.

[CBK75]

My cardiologists told me that this is a very powerful meditcation but it does a excellent job in slowing down heart failure. The latest intern said that the drug was cool. That made me laugh.
I am now on 50mg x 2 per day I started off at 25mg x 2. I had many side effects when I first got on it but most of that has gone away.
You have to trust that your doctors are doing what is best for you in your situation.

Chris

[LindaSo]

I agree with Cynthia. I would wait until I got up to Dr. Ashley. If you haven't already, why don't you make the call tomorrow morning.

[Pam Alexson]

Well Chris is in end stage awaiting a transplant so he is a perfect example of who may be taking the drug carvidolol and it is working for him. That is not to say that only end stage HCM patients could be taking it .. it is just there is leeway for maximizing your other medications first and then adding meds as deemed necessary.

My brother is also around your stats in physical size( 365 pounds and 6' 1") he just went to my HCM specialist Marty Maron.
He has been diagnosed for about 8 years and has no gradient on rest . In time a stress echo may be done to visit the possibility of stress induced gradient which is important to know. My brother can not benefit from a stress echo or an MRI image presently due to his size and the limitations of what the pictures may reveal .. and he will not fit in the MRI tube. An open MRI cannot be utilized to visualize the heart apropriately. He is first increasing his Verapamil Er over the next weeks to 120 mgs BID and then 240 mgs Am and 120 mgs Pm. After that settles in we all talked about the management of his obvious body edema and the need to add Lasix. He also takes a med called avapro so that will be looked at.. He takes another diuretic called HCTZ which is good for BP but not very effective for volume of fluid management..

I think when people are large and there are many of us with HCM who are we underestimate the amount of fluid we may be carrying. This added fluid which appears in our abdomens, arms and often last place.. feet and lower legs is not always well managed when seeing non HCM specialists. This is complicated because WE DO NOT HAVE traditional heart failure BUT, some do as in end stage or burnt out HCM. Most HCMers, if they have heart failure .. it is diastolic heart failure with normal to near normal systolic function and preserved ejection fraction..Most cardiologists do not make this very important distinction and therefor treat it with traditional heart failure medications, early on. It is not to say that those medications will not be beneficial as well but your HCM has to be looked at expertly and guided in that manner . Some of the traditional drugs although effective for some can cause a worsening of symptoms and progression of the disease if used in someone whose heart may not be at the right stage to use them. The extra fluids will impact intracardiac pressures. HCMERS still and especially need to continue especially when on diuretics to take in LOTS of clear preferably water type fluids. This is not what a heart failure doctor or clinic will direct you to do. We need the volume( our HCM hearts demand it) but it is a tight rope balance and by taking in fluids and using the diuretics we get the kidneys to work as they have actually begun to work against us when we have diastolic heart failure... they will try to hoard the fluid and it becomes a slippery slope downward.. complex but this is how it goes.

I see that you are also on atenolol. That too can be looked at and adjusted. It is important that the intracardiac pressures be monitored and the overall effectiveness of the relaxation of your heart be guided carefully . I see from your numbers that your left atria is already pretty up there in dimension.. over time prolonged exposure to increased intracardiac pressures have impacted your heart and resulted in widening of your left atrium.. this unfortunately sets the stage for the onset of atrial fibrillation. Mens hearts are different from womens and what maybe too large a dimension for my heart could be fine and tolerated in another women's heart an vice versa. So this is an example of how it plays out. Every heart is unique and certainly every HCM heart fits that bill as well. What is large and ready for a-fib is not the same number in another individuals heart.
Fact to be reconciled with is.. negative conditions impact the heart and result in the heart making its own changes( these are not beneficial changes in the long range plan)... Without careful, expert, guidance, monitoring and appropriate management.. those changes are likely over time and exposure to add to the negativity already a problem. I cannot stress enough to you or anyone here how VERY important it is to have EXPERT management and oversight of ones HCM. SOOO .. please make it your goal to see a specialist and listen to an expert.. if you are not satisfied with that expert... see another. Also when you are satisfied then find a local cardiologist or use the one you have, whoever will play nicely with the expert. I use my electrophysiologist and mostly I DIRECT MY PCP as to what she needs to do to manage my care from home. I always jump ship( actually I get in a car or on the train--LOL) and go directly to the HCM expert for any HCM priority needs.

I take a very strange combination of meds and they work well for me. I take a CCB ( Diltiazem) 2 BB's (atenolol and sotalol)-- to stop the a-fib, an ACE inhibitor( Lisinopril)-- to mange my diastolic heart failure, a diuretic(Lasix) and blood thinner (coumadin) ..I take a lot of other meds also but these are the main heart ones. My diabetes is diet managed over he last 6 years since gastric bypass surgery and stayes in great control with no medication any more since the surgery.
I am also wondering if you perhaps have type II diabetes or hyperinsulimia... and if you have been tested for sleep apnea? These are important things; co-morbidities, to be sure that you are adequately tested and treated for and also have you had a thorough check of your thyroid gland as in hands on really felt and assessed well?

I hope all our comments help guide you in the proper course and that as you understand and learn more about your HCM you will become a strong advocate for getting the right care for yourself and others and continue to offer / share your journey with us all.

My best to you,
Pam

[Mommyto3Boys]

Hi -

My husband is taking Coreg (Carvedilol) but he's in end-stage HCM with dilation of his left ventricle and left atrium. His septum is still thick, but his heart has started to become "flabby" and enlarge. He's also on Fosinopril and CoQ10. We were told that Atenolol was the best beta-blocker for HCM, but I've heard conflicting reports on that...

Also want to add he's got weight to lose as well, 5'8" and 310lbs - he's lost about 20 pounds so far, but they've told him nothing but walking around the block, which makes it a bit hard. Good luck!! :)

Hope it works out for you!