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Hi Everyone. Posting again and looking for thoughts. I had my follow up Echo yesterday. My resting gradient is 7 and my Valsalva gradient is 10. I was diagnosed 2/24 with HOCM by gradient was 54 at rest. 67 year old. I’ve been in Camzyos for 11 months( 5mg @8 months and 10mg @ 3 months). I still feel pretty tired or fatigued most of the time. The dr said to me yesterday “ well sometimes we move patients from the oHCM category to the nHCM category. He added Jardiance to my med cocktail and sent me on my way. My initial hope was that if the Camzyos didn’t work I would go for a septal reduction. But from the sound of it if my gradient is low not sure if septal reduction will help. My BNP is 43 (was 54 before starting Camzyos) my E/E’ is 15.66 and my E/A ratio is 1.15. My Atrial LA Volume index: 36.9 and my LA Volume is 80.8 ml. He’s saving by all accounts I should be feeling better. My hope is that further time will help or switching to Afichemten if it is proven to help those with nHCM. I’m trying to lose weight (5’11 218lbs) pray for the best. My symptoms all came on suddenly 8/13/23 two months after my pci of my Right artery. It would seem odd that a “stiff heart/diastoic dysfunction so suddenly unless it was the HOCM. No micro vessel issues and the follow up Cath showed fully opened stents. My only thought is that my HOCM is extremely dynamic. I’m on 10mg Bystolic, 2.5 Amolodapine, 20 Lipitor and just started Jardiance yesterday of 10mg. So any thoughts? Stay the course? Has anyone benefited from adding Jardiance? Anyone had their HCM symptoms come on suddenly?
Thank you all. I appreciate being able to express on this platform and I value your feedback.
Ps- MRI showed less than 15% fibrosis and I do plan to have a follow up stress Echo to see if there is a meaningful destruction under stress.
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https://www.jacc.org/doi/10.1016/j.jacc.2020.03.064
Hi @mustang68, I posted an article from the JACC and another from the NIH and another regarding Jardiance in heart failure that you may find interesting, but I am not sure if it applies to your situation. You have a wealth of data regarding your stats, and ask great questions.
My question to you is have you asked these questions of you cardiologist?
Is your cardiologist up-to-date on all things HOCM?
Have you considered a second opinion? Or a third?
HCM, obstructed or not, is such a weird deal! It's like we all have some things in common, but then we don't and some have wild and crazy things they go through.
https://pubmed.ncbi.nlm.nih.gov/32466879/
https://www.cardiovasculardiseasehub.com/archives/9497
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2 ReactionsIsnt Jardiance a diabetic med used for lowering blood sugar?
My symptoms of HCM have been with me all my life! I have always been active and knew something was wrong when playing sports!
As i got older symptoms got worse!
It wasnt until i had my exercise heart failure when they fianlly caught what i have
48 resting 122 provoked
After being on camzyos i was able to get some of my life back at least getting on my bike:)
I did start gaining weight while on camzyos 13 lbs
I been off camzyos 12 days awaiting surgery in 4 weeks
I have lost 7 lbs since!
I wander if you shoukd have your lab works checked and look for low testosterone or other issues that may be causing uour fatigue
Food luck and keep us posted
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1 ReactionThank you so much for your kind response. Unfortunately I have been to 4 cardiologists from Stamford Hospital, two HCM specialists from Columbia NYC, two from Hartford hospital and an HCM specialist from Yale. Everything was going fine with me until 65 1/2. It is disappointing. Opinions from different doctors 1) you have a stiff heart from high blood pressure 2) you have obtrusive HCM 3) you have non-obstructive HCM. 4) you have small vessel disease 5) we’ve fixed your obstruction with the Camzyos but you still have “stage 2” diastolic dysfunction. 6) your diastolic dysfunction shouldn’t be giving you the symptoms you have. It is your stress and anxiety (not in my opinion ).
I just started Jardence yesterday. I’m hoping it helps my diastolic function. If it does not I am going to see if I can get into the Imbria for Nireflex trial. But in the meantime It seems from everything I’ve read that Mayo Rochester is the best for evaluation. Also, perhaps Aficamten will work better. As you can tell I’m a little frustrated. I’m not going to give up and still try to lift all rocks. Yes- crazy disease. I have read so much. For me how quickly it came on is so confusing. Best to you. Thank you. ✌️😊
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1 ReactionCorrect/ it’s for diabetics but recently through clinical tests for some Empagliflozin (Jardiance and other trade names known as a SGLT-2 in inhibitor) was discovered that it promotes active relaxation of the heart and improves diastolic dysfunction (DD) in many. They don’t know entirely why it works for DD. It wasn’t developed for it. I guess it’s kinda like how Viagra was produced to control blood pressure but helped something entirely different. I’m at my wits end so I’ll try anything at this point.
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1 ReactionLab work good. Testosterone - not sure. I generally feel crappy the day after I exercise. How thick is your septum? Mine is 1.8cm/ 1.9cm depending on the tech.
Mine is the same 19mm
I used to do alot of running and bike riding 2014-2018 i was running 25-30 miles a week with 50 miles per week biking
One night i went for a run and i just disnt have it in me to run 1 mile i did alot of walk and run tht night!
It just seemed to continue each run some days i could run no issue then some days i would be walking and running it was frustrating!
I quit running and ficused in biking and it got to do the same
I would talk to my doctor ans he would say its exercise induced or i was going to hard to slow down!
Some days i knew if i was gonna struggle as soon as i left the house my jaws would ache, my chest would get tight and feel like i was breathing thru a straw, my upper legs would get real tight, i generally would just turn around and not ride.
My local cardiologist put me on carvedelol i told him my symtoms are worse during my work out with this stuff, which come to find out it is a vasodilation which makes hcm symptoms worse
Camzyos allowed me to get back on the bike but not get after it! Sudden quick movements kick my heart murmur in!
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2 ReactionsKeep in mind that Camzyos does not fix an obstruction. It relaxes the heart and symptoms may subside, but when you go off Camzyos, it is likely the symptoms will return.
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3 ReactionsYep mayo cardiologist put me hon camzyos to get me stronger while awaiting a surgery date
When i first got put on it i had suffered two exercise induced hear failures
I was in bad shape after those heart failures, i couldnt climb up a step stool or go up the steps to a movie theater!
The doctors here thought i had pneumonia and pleurisies
When i went to the mayo they said because of my obstruction all the oxygenated blood was backing up in my lungs
Rest of my body had starved of oygen.
So i been off camzyos for 12 days and i have seen the symptoms coming back already
They want me off 4-5 weeks before surgery
Because of the poor shape i was in i tell everyone camzyos was a miracle drug for me!
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1 ReactionSo your EF dropped below 50% from the exercise heart failure?
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1 ReactionThats a good question!
I was just told the obstruction gets worse as i stress the heart more! I get some regurgitating the harder i go!
Since i been on camzyos they told me if i start feeling the murmur that i need to back off.
So basically i couldnt do big hills on my bike
My EF has been about 65% each time i go in for my echo.