Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

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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karen317 | @karen317 | Mar 22 12:48pm

In reply to @deanna529 "Nobody ever told me that. So I would check with your cardiologist." + (show)

I know if you are on Camzyos you should get an ok from the pharmacy first. I have gotten some cold medication ok ed by my pharmacist. Every month when I fill my Camzyos I mention all the meds I take regularly and the ones I take as needed . I have been approved for naproxen sodium , Tylenol and Coricidin HBP but BEFORE TAKING THESE or any medication call your pharmacy and make sure it is ok .

karen317 | @karen317 | Mar 22 11:50am

In reply to @karen317 "I was diagnosed with hcm in October 2021 at the age of 62. I started the..." + (show)

I am karen317 I wrote in a year ago . I thought I would give you an update. I am still doing very well on the Camzyos. I also was very hesitant about taking the medications especially with the risks. My personal thought was I wasn’t living much of a life wanting to nap all the time so it was well worth the risk. Fast forward I have been on the medication for almost 2 years now . I am still doing really well . My drs and the echo cardio gram crew are all amazed at what they see in my tests . Main thing I feel better I am able to do things I would not of been able to before the medication. Right now I am babysitting for my 3year old granddaughter and 6 month old twin grand babies every week day. I also am taking my elderly mom to physical therapy 2times a week and her to her dr appointments . I am exhausted at night but I am able to help my loved ones. I know there is no way I could be doing this without Camzyos . I just want to say to anyone thinking about trying it and your cardiologist feels you are a candidate to really think about it and weigh your pros and cons . I am so thankful for the Camzyos.
P.s. I also think getting the echos every 3 mos gives the drs and myself comfort in how I am doing . We will know right away and take the right steps

Debra, Volunteer Mentor | @karukgirl | Mar 22 10:03am

In reply to @giolig68 "Salve a tutti aspetto da tempo questo farmaco in Italia,se ne parla ma con costi proibitivi,affetto..." + (show)

Ciao @giolig68 e benvenuto a Mayo Clinic Connect! Mi Italiano est molto bruto! Io capsico un po, io non parla l'italiano!
Grazie per translation!
I am so sorry to learn from you that you have HCM and are unable to obtain Camzyos in Italy. We know that other medications, such as beta blockers or calcium channel blocker only help with symptoms, and they barely even do that...so it must be frustrating to here of Camzyos and not be able to find or afford it. I know nothing of how the Camzyos program works with Bristol-Meyers, but it sounds like from others here in United States and Canada they have been approved on the program that funds the drug costs for them. Is there anything similar in Italy you can find through the drug company, Bristol-Meyers? Where in Italy do you live? Are you near a Center of Excellence?

giolig68 | @giolig68 | Mar 21 4:42pm

Salve a tutti aspetto da tempo questo farmaco in Italia,se ne parla ma con costi proibitivi,affetto da cardiomiopatia ipertrofica ostruttiva diagnosticata nel 2009

View Translation

katiekins | @katiekins | Mar 17 7:31pm

In reply to @deanna529 "I developed a metal taste in my mouth, burning mouth syndrome, and chronic lingual papillitis. It..." + (show)

Hi Deanna,
Sorry to hear of all your symptoms on Camzyos that’s annoying when for some it’s a miracle. What is the measurement of your thickening? Mine is 1.7 mm I believe but getting more symptoms now than before. Not terrible but fatigue after eating and slight dizziness. Not sure which way to go and hate the thought of surgery. All good wishes to you on your journey.

lakehappy | @lakehappy | Mar 13 3:49pm

In reply to @susanml "Has anyone been told what over the counter remedies (for colds, headaches, muscular aches,etc) they can..." + (show)

I was told by Dr. office that Coricidin R. I couldn't find such a thing so CVS Speciality pharmacy said that the ingredients in "coricidin HBP(high blood pressure) was ok. It knocked me out so much. I couldn't stay awake. Now struggling with a cold and cough and am dizzy and weak.

deanna529 | @deanna529 | Mar 13 11:37am

In reply to @susanml "Has anyone been told what over the counter remedies (for colds, headaches, muscular aches,etc) they can..." + (show)

Nobody ever told me that.
So I would check with your cardiologist.

deanna529 | @deanna529 | Mar 13 11:35am

In reply to @katiekins "Hi Deanna, so sorry to hear you came off Camzyos. May I ask what your symptoms..." + (show)

I developed a metal taste in my mouth, burning mouth syndrome, and chronic lingual papillitis. It triggered a lot of things that I have never had before. It was all reported to Bristol Meyers Squib. I am still suffering. ;-(
Half-Life of Mava is 6-9 days.
I had a septal myectomy in 2017. Evidently, they didn't or couldn't take down the bottom of my heart enough. So I still have an obstruction. ;-(
Aficamten is not approved yet in the US so I am in a clinical trial. I believe I am on the placebo of metoprolol. After the trial is over I suspect I will go on Aficamten. Good luck to you whichever way you go.

susanml | @susanml | Mar 13 10:50am

Has anyone been told what over the counter remedies (for colds, headaches, muscular aches,etc) they can take while on Camzyos? Good health to you all.

katiekins | @katiekins | Mar 12 4:00pm

In reply to @deanna529 "After 6 months on Mavacamten, I decided to quit. I had side effects triggered by the..." + (show)

Hi Deanna, so sorry to hear you came off Camzyos. May I ask what your symptoms were? I felt great on it for a couple of weeks but had to stop also of side effects sadly. Does anyone know how long it takes for the drug to come out of our system. Aficamten I don’t believe is here in the U.K. so am thinking of a myectomy.
Thank you, wish you all the best.