Is Camzyos effective long term?

Posted by par4rosy @par4rosy, Mar 9 8:45am

I was diagnosed with HCM a year ago by My cardiologist and got on
Camzyos 5mg in early December 2023.
Within a week I felt so much better; was walking faster, was much less tired, chest didn’t feel constricted and wasn’t breathless. I felt excellent.
But a few days ago all the old symptoms started to come back. So disappointing.
Wondering what my next steps should be?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

nbs | @nbs | Oct 22 5:45pm

In reply to @manuelpo "Thank you so much for all the information!" + (show)

I am happy to help any time. I am also lucky my doctor is with Washington University in St. Louis. They were and still are part of the research for our drug. Let's just hope that Social Security, therefore Medicare, still exists next year. Imagine trying to cover costs for Camzyos!!

mpjg | @mpjg | Nov 26 2:21pm

In reply to @jaymaysea "Hi @par4rosy. Reach out to your cardiologist. I have been on 5mg of Camzyos since last..." + (show)

Thanks for this post jaymaysea. I was started on 5 mg Camzyos in August and had significant symptom relief. But my gradient came down too much too fast and they reduced my dose to 2.5 mg. Since then I have been experiencing chest tightness and breathing difficulties on exertion but my Camzyos protocol echos indicated my gradient was just fine. Because of your post, I thought to ask for a stress echo which lo and behold showed that my gradient significantly increased upon exertion. I have now been returned to 5 mg and hopefully that will alleviate the exertional symptoms.

stayhealthy2 | @stayhealthy2 | Dec 5 8:36pm

All comments are very helpful and encouraging. I’ve taken Camzyos since 5/1/24 and had relief from symptoms within a couple of days. Occasionally I experience a day or two of fatigue but usually associate it with overdoing or not eating properly so I get back on a healthier routine and the fatigue goes away. I find that getting out socially and staying involved with church activities, just being with people is stimulating and keeping me upbeat.

hood | @hood | Dec 5 11:33pm

I ran out of camzyos due to some inurance miscommunications. Will not get it for a few days. Anyone missed a few days of camzyos? Any major side effects?

manuelpo | @manuelpo | Dec 6 7:24am

In reply to @hood "I ran out of camzyos due to some inurance miscommunications. Will not get it for a..." + (show)

Even though Camzyos may remain in your system for up to 4 months, I would suggest you to call your Cardiologist and ask him that question for he is the most qualified to treat any potential side effects with additional prescription if needed.

shampoou | @shampoou | 3 days ago

In reply to @hansj "Hi all, I've been on Camzyos since March 2023, so a few days short of a..." + (show)

may i ask, are you still feelin great and on 5 mg? i am on month 7 of 5 mg, grad went from 124 to 18. very thankful!!

HansJ | @hansj | 3 days ago

In reply to @shampoou "may i ask, are you still feelin great and on 5 mg? i am on month..." + (show)

Hi, yes! I’m still doing great on 5mg. In fact my “off” days are getting even less frequent, perhaps due to being on the drug for so long now.

captainterry | @captainterry | 2 days ago

In reply to @shampoou "may i ask, are you still feelin great and on 5 mg? i am on month..." + (show)

2.5 years, 2.5mg, all good. No side effects and no return of HOCM symptoms. Still being monitored very carefully. Very thankful!!!
My journey has been somewhat documented by other post I have made on this site.
Enjoy your Christmas and celebrate all that is good. There is always something to be thankful for!
Curt