Connect
Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
Like
Helpful
HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
Connect
Hi Debra-Yes it did scare me but he said don't worry I just want to be very careful with you and I'm not happy with how this one thing looked so we will do it again. He is so amazing! 🙂
@jaymaysea, I hope it goes well for you tomorrow at your visit. @kelliw shared that the doctor is in the drivers seat and works with the patient, they can overrule the drug company protocol and adjust as they see fit...maybe your doctor does not know that? How you feel and how you are reacting should be the reason to adjust medication, based on the treating physician's opinion, not on the drug company's protocol. You are a person, not a number!! We are all different and react different. Six weeks seems like you should be seeing better results, but you still feel icky, and HOCM symptoms are still there...GRRR
-
Like -
Helpful -
Hug
2 ReactionsThanks so much for the positive note. It really means a lot.
Happy everything is working. You are so blessed to have a caring, proactive Dr. I see my Dr today. Will see how it goes.
-
Like -
Helpful -
Hug
2 ReactionsYou are lucky your doctor is so involved. A senior researcher on Camzyos acknowledged that it is important to have an experienced sonographer to do the echo. Because w HOCM there is contamination of the image and it’s hard to get a good reading. Great that your doctor came in to assist! And that he takes your functionality into account, not just echo results. Keep feeling better!!!
-
Like -
Helpful -
Hug
3 ReactionsHello all. I posted on this thread about learning that I could take Lexapro for anxiety and depression with Camzyos. Regardless of what a Camzyos.Rems pharmacist may tell you, I recommend NOT taking Lexapro. According to the online pharmacist it is not contraindicated but it made me sicker than I have ever been. Have only taken it at 10 mg a few times but it most certainly does not mix well with Camzyos. Has anyone had success with a med while on Camzyos that can reduce anxiety and depression?
-
Like -
Helpful -
Hug
2 ReactionsPlease let us know how it goes! 🙂
Thank you for that info! It was really reassuring that he would take the time to come in and see exactly what he wanted to see. I hope you have a great day! 🙂
My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.
I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.
I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.
I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.
Hanging in there everyone!
-
Like -
Helpful -
Hug
3 ReactionsThank you for the update! I am on 50 mg of Metropolol. I hope you have a fantastic weekend with your friends! 🙂