Just Diagnosed with HCOM

@dmarino4900
I am not familiar with Camzyoz. You posted causes heart failure. Isn't HCM a form of heart failure and the Camzyoz is a drug for that form of heart failure.

A lot to go through with have breast cancer and I saw you posted diabetes and thyroid. Have yo talked to your doctors about this and if a depression type medication would be helpful to you?

I take a medication that my psychiatric medication specialist perscribed. I am told will have to take the rest of my life. I had a lot on my plate and you do also. It is important to have mental health just as much as physical health.

Good luck.

Yes, I am on Camzyos for obstructive hypertrophic cardiomyopathy. That’s where the heart becomes enlarged and stiff. The Camzyos helps the heart muscle to relax . It worked for me. But now one of the side effected is EF. The left ventricle cause the heart muscle to pump at only 45. Mild heart failure. So stopped the meds for a month , then have other echo and possibly go back on at 2.5. Thanks for your input. It all helps. Hugs back at you.

I’m 63 and have been taking Camzyos for two months. They say my echo shows improvement but I feel like I am more fatigued. Second echo in a week and a half. I was scared not to try it and hopefully will start feeling better soon. Good luck!

I too had an alcohol septal ablation at the Mayo Clinic. The surgery was uncomfortable but necessary. Your Cartiologist recommendations will depend on the status of your atrium, ventricle, and septum. In my case, I had a sudden cardiac arrest and definitely needed the ablation. If you have HCM or HOCM is certainly not a one size fits all.

Hi! I think it’s normal to be frightened and I felt the same way. For me, Camzyos has considerable helped me demonstrated by both the way I feel and my improved ECHO results. I hope you can look forward to the same. Hang in there!

Hi,
I am 74 and was diagnosed with HOCM for the first time about 8 months ago. My local cardiologist wanted me to go on Camzyos right away but after more detailed tests at Johns Hopkins (a Center of Excellence for HOCM), they put me on verapamil and jardiance. I have zero side effects, reasonable drug prices, no insurance hassles and, most importantly, I feel terrific. Of course, if my numbers change, then I will need to evolve my course of treatment. But just wanted you to know that my local cardiologist would have been moving way too fast - also I probably would have been rejected as a Camzyos candidate and have had to go through all of that before settling into a great regimen.

Hang in there. Last summer was the same for me (before I went on verapamil and jardiance - this summer is a totally different story - I am out and about with almost no breathlessness at all. It is all a shock to begin with but remember that we are all here for you and most of us are doing quite well.

I just received an email from Camzyos Support group saying that my insurance has denied the pre-authorization. They will submit an appeal.
Has anyone else had the same issue with their insurance company not wanting to cover it? I’m not sure what I’m going to do if they don’t cover the cost? I can’t imagine living my life the way I feel now not being able to take a walk outside without huffing and puffing! 😮‍💨

Your cardiologist and camzyos should be working together to find a way to make this very affordable!
So make sure your cardiologist is in the loop
You also need to make sure your cardiologist is on the camzyos REMS program
Hope this helps

I was diagnosed with HOCM/HF in April. EF is 33%. A month later I was also diagnosed with Non-Hodgkins B-cell lymphoma. I also have stage 2 Chronic Kidney Disease and at the end of July severe stomach pain put me in the hospital where an endoscopy was performed finding 6 large deep ulcers with H Pylori infection. I just joined connect today and really appreciate the information being shared. I have sat and wondered, "how does one live with all these diagnoses?" I'm so glad I finally have a place to learn from the experience of those sharing here. So Thank-you!