Camzyos: Can it cause low blood pressure?

Posted by klima12 @klima12, Nov 6, 2023

Has anyone taking camazyos experienced really low blood pressure. I usually have low blood pressure prior to be diagnosed with HCOM but now it is very low and I am having trouble with daily living. My cardiologist doesn’t seem to think it’s from the medication.

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I’ve been on it since April of this year and have no blood pressure issues at all.

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Are you on any other meds, such as beta blockers?

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No, I can’t take beta blockers due to low BP

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My typically low b.p. decreased to 70s over 50s on average while on Camzyos plus I inexplicably lost 20 pounds. There were other factors like overreplacement of thyroid meds that wasn't discovered until much later that may have contributed to the negative changes that I experienced the last several months prior to stopping Camzyos. Unfortunately I have experienced no improvement in b.p. or weight since stopping in July. In fact I am now in stage 4 heart failure and also have many struggles with activities of daily living. Basically bed ridden. My cardiologist also doubts Camzyos was the culprit. Camzyos made me feel better for many months but never showed a positive effect on ECHOs. Perhaps my longstanding HOCM was destined to progress regardless of what medication I was taking. Will never know. I declined surgery due to potential complications like cognitive decline, conduction problems, anxiety, depression, none uncommon after septal myectomy.

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Thank you for sharing your experience. I have also lost a lot of weight since April but I did change my diet. My Cardiologist has now increased my camzoyes and I am worried it will further drop my blood pressure. I also have thyroid disease so waiting on blood tests to see if that is acting up

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I started Camzyos 5 days ago and was wondering how long before I start feeling side effects if any.

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My BP seems to have increased very slightly and my heart rate is also very slightly higher since starting Camzyos 7 weeks ago. My family Dr assures me that they are all within normal range and nothing to be concerned about. I'm also on Diltiazem.

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@quinn

My typically low b.p. decreased to 70s over 50s on average while on Camzyos plus I inexplicably lost 20 pounds. There were other factors like overreplacement of thyroid meds that wasn't discovered until much later that may have contributed to the negative changes that I experienced the last several months prior to stopping Camzyos. Unfortunately I have experienced no improvement in b.p. or weight since stopping in July. In fact I am now in stage 4 heart failure and also have many struggles with activities of daily living. Basically bed ridden. My cardiologist also doubts Camzyos was the culprit. Camzyos made me feel better for many months but never showed a positive effect on ECHOs. Perhaps my longstanding HOCM was destined to progress regardless of what medication I was taking. Will never know. I declined surgery due to potential complications like cognitive decline, conduction problems, anxiety, depression, none uncommon after septal myectomy.

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I did have a septal myectomy in 2017. It didn't help much. They couldn't reduce the thickness of my lower heart. I didn't have any of those side effects from surgery. Still had to be on a betta blocker. Just recently went on Mavacamten...Not for me. After 6 months, it triggered unusual side effects for me. Everyone is different. Now going on a clinical trial. Hopefully to be approved soon.
To answer your question, yes it did keep my pressure low. Since I am off, the pressure is still good, but not as low. Mavacamten did show good effects on echo...but I just felt that I couldn't handle it anymore. I needed to see if the side effects would subside. so far, no luck.
Good luck to you.

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I would love details on the clinical trial you are going on if you have the time to expound. Best of luck to you as well and thank you for writing.

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