← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@jaymaysea

Unfortunately, probably not. I can send an email using the portal. I can also send a message to the nurse navigator. But, I doubt I will get a response over the weekend.

Can you give me some examples of situations that could could up? I have been on the lookout for dizziness. But, I am not sure what else could occur.

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Replies to "Unfortunately, probably not. I can send an email using the portal. I can also send a..."

Dang.
Well, I wish I could give you an example, but I have no experience with Camzyos. @kelliw and @hansj have a few months on you and I know they have been so willing to share their experiences...let's see if we get them to chime in about what to look out for in the first week. I think @starbuck41 was pretty active his first couple of weeks as well. It seems that we all are so unique and individual, no two people are alike and therefore probably we can't say "this is what to expect" the first week or so. I hope you are feeling calm, resolving to keep your positive attitude, and know you are already stronger than you thought you were!
It's a journey you are on...and each day may be different. Praying for peace and only good effects @jaymaysea.

Good morning! The only side effect I had was dizziness. It happened about 2 weeks in, for a couple of weeks, then went away. I have been lowered from 5mg to 2.5mg, because my gradient went down so much in the first 60 days-which is a good thing! I was worried a few weeks ago because my blood pressure got really high-like 190/105! It was a Saturday and I thought I couldn't reach anyone but then I decided to call my cardiologist's office and got his answering service and he called me, so I would recommend that if there is an urgent problem. There is also a 24/7 line for problems through the specialty pharmacy I think. I accidentally drank something with grapefruit peel extract in it, so called and the answering service put me through to a pharmacist. I hope you feel great and don't need to call anyone! 🙂