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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!
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I may be starting and have concerns too. Have you experienced any side effects such as headache. Also read I can’t take medication for heartburn such as Tagamet. Have you had to make changes because of Camzyos?
Can you comment on getting the medication, easy or frustrating as some others have mentioned.
Thank you.
I may be starting Camzyos this week. How are you feeling now? Any side effects?
It took me 1 month and a half waiting time to get an appointment with my Cardiologist (highly specialized in Hypertrophic obstructive cardiomyopathy (HOCM),) in Aurora University of Colorado:
https://www.uchealth.org/locations/uchealth-cardiac-and-vascular-center-anschutz/
After I met the Cardiologist, he gave me 3 alternatives for my HOCM and I chose Camzyos as the right treatment so it took me about 2 weeks (a lot of paperwork to fill out with his nurse helping me on that) to get the prescription home delivered by mail only overnight (they do not have at local pharmacies and I requested mail overnight plus signature required). The overnight delivery was at no cost to me. The medicine cost is $8,600 per month and my insurance covers it with $200 monthly copay. Since I have been out of work for over 2 years, Brystol Myers Squibb laboratory that manufactures Camzyos took the paperwork filed out with my nurse (the Cardiologist nurse) so they pay for me $190 and my copay is only $10 a month.
Side effects: a little light dizziness for a few early mornings and that was it since I am very careful not to take the over 100 over the counter medicines that interact with Camzyos. Me and other 5 patients now have NO SIDE EFFECTS at all since we follow strictly all the instructions from my Cardiologist: good diet (no processed food) and light exercise such 1 to 2 miles relaxed walks every single day.
After I took Camzyos for 2 days all my angina (chest pressure) is gone and has not come back at all. Further, I am able to walk fast with no angina at all. My septum (left wall ventricular wall muscle of my heart) went down in thickness from 2.2 cm (almost 1 inch) to 1.6 cm in only 8 weeks. After 6 months treatment my septum thickness is now between 1.2 cm to 1.4 cm. Before I took this medicine I had strong faith that it will work with no side effects so no matter what, I put in my mind only positive thoughts about this since Camzyos is avoiding me Alcohol septal ablation (ASA) plus having a pacemaker or having an open heart surgery.
I am feeling wonderful with freedom to go hiking, climbing, light slow jogging, walking my dog and I am still taking camzyos 5 mg and will continue taking it till the Cardiologist ask me to change dosage or stop it.
ALL this process can be challenging just hang in there and do your best for it will work out for you. I wish you the best !
Still feeling great on camzyos after 2 years and 5 months on 2.5mg. No side effects to date. I take 3 generic meds for pressure, rate, and cholesterol. No other meds so no restrictions or reactions. Regarding costs and insurance arrangements, my cardiology support staff took care of setting that up along with the required clinical documentation. An experienced team with HOCM should know how to get that done.
Being older and on Medicare helps. This and a combination of a private Medicare Rx supplement I had, BMSquib, Healthwell Foundation, and CVS Specialty pharmacy got it done. This was all coordinated by my cardiology team with a little online paperwork by myself.
Blessings and God's speed.
Hi @junecc . You didn't specifically ask me about this but I will chime in anyway. I started Camzyos just over a year ago at age 59. I have never had any side effects whatsoever. I've been on Omeprazole for something like 10 years. I **think** both Tagamet and Omeprazole are used to treat the same kinds of problem. Omeprazole was one of the medications explicitly referred to in the Camzyos warnings. I had several conversations with my cardiologist, my pharmacist, my family doctor and my Camzyos REMS program nurse case manager, and all of them advised that, in my case, I could continue the Omeprazole while taking Camzyos but that I should (i) watch out for any problems - of which there have been none - and (ii) take the Omeprazole in the morning and the Camzyos at bedtime. I have no medical expertise and you should not take this as advise for you - listen to your experts, not the internet - but in my case there have been no issues except that I am no longer allowed my beloved grapefruit. Good luck with your treatment!