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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 5 days ago | Replies (736)Comment receiving replies
@whidbey, that must be a lonely feeling not having the support of a nurse navigator or specialty pharmacist to talk to when you just began a brand new drug. Being so new on the drug seems like you should have close follow up and easy communication, especially regarding drug interactions. Are you able to contact your doctor about this? It seems like a serious issue, and warrants closer medical supervision. You only recently began the Camzyos treatment...I just can't imagine you would have no way to communicate side effects to your physician. Is your cardiologist familiar with HOCM and Camzyos? @kelliw has an awesome champion cardiologist who has been so supportive of her and went to bat for her when she was told to adjust her medication. I mention this because you have to be your own advocate sometimes. Not everyone has a super star for a cardiologist, and they have to fight for themselves. @jaymaysea began Camzyos recently and had issues with adjusting meds too. Please be sure you are being heard. It is important because this is a new drug, and you need to be followed closely. I would encourage you to contact your doctor. May I ask where you live?
Replies to "@whidbey, that must be a lonely feeling not having the support of a nurse navigator or..."
I have an amazing Cardiologist at the University of Washington and he is one who encouraged me to take Camzyos. He has seen amazing results with patients in his practice. I just don't have a nurse navigator or patient advocate. This blog has a wealth of information for me.
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@whidbey have you tried reaching out to a Nurse Navigator at Bristol Myers Squibb? That said, I have not found them to be that helpful. because tend to refer you to back to your cardologist.
My cardologist has a nurse navigator that is very responsive when I contact the office ( using emails) with problems. My heart rate was averaging between 95 and 110. I reached out and got a response within 15 minutes that they were calling in a prescription for Metoprolol succinate 12.5mg. On the other hand, my cardologist says that rapid heart rate is a symptom of Camzyos. But it’s a symptom I am having. It is frustrating and scary. But it’s your life so you have to advocate for yourself.
My cardologist and I had to have a “heart to heart” because he is very pro Camzyos and follows the dosing guidelines to the book. When I tell him my symptoms ( initially I was lightheaded, now I am suffering from a high heart rate) he tends to say symptoms with Camzyos are rare. He reduced my dosage from 5mg to 2.5 even though my symptoms were not improving because it’s what the algorithm called for based on my limited echo. @kelliw’s cardologist deemed it was in the best interest of the patient not to follow the guideline.
After some back and forth, my cardologist agreed to do a stress echo since my obstruction is only evident upon excretion. We will see it there has been improvement in my LVOT and EF ( ejection fraction) since my last stress echo.
Bottomline, you MUST educate for yourself if you are having issues which is not easy because the drug is so new, know your LVOT and EF so you know whether you are improving, you MUST ask question, and listen to your body! You are an individual and this drug is not for everyone. Some respond very well, other not as much. Unfortunately, I appear to be in the later category. I have been on it for 8 weeks. I expected to be able to do a lot more by now. My cardologist wants me to stay with it. So I going to hang in there for a while longer. We will see what happens with my stress echo tomorrow. I may be headed to surgery. But, with the support of the group, I decided to give the drug a try first.
Use this group, ask specific questions. The participants are wonderful, caring people, that are willing to take the time to give you the benefit of their experience.