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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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Glad it’s going well
I would really like you to know how much I appreciate your comments about this medication. My husband has HCM. it took forever to get this diagnosis. Hopefully he can get relief from his symptoms once his cardiologist prescribes this.
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1 ReactionHello @chris7121 , welcome to the HCM support group. I am not surprised by your comment that it took forever for your husband to be diagnosed. That seems pretty common for most of the HCM community. It took years for me as well, and I was 61 by the time they figured it out. It took two trips to two different Centers of Excellence (COE) for that to happen though. This is something that a lot of cardiologists are not familiar with, hence the difficulty finally getting the truth. I had to have a septal myectomy, done at the Mayo, but this new drug is showing a lot of impressive results for a lot of people. Not everyone will tolerate it, sadly, but so far it seems for the majority posting here, they are so surprised by how fast it works, how good they feel, and how impressed they are with their results. I encourage you to poke around here on Mayo Connect and educate yourself as much as possible about HCM and HOCM. The Mayo Clinic is a COE and leader in treating HCM, and you can find a ton of information about this disease. Knowing that this is genetic, and is passed by a parent can perhaps make you wonder, if you have children, could they have this too? Or could another relative have it? This is a wonderful supportive community and you have come to the right place for questions, support, and to know you are not alone. It is really important that you learn as much as you can so you can be you and your husbands advocate. When does your husband start taking Camzyos? Is his doctor knowledgeable in treatment of HCM or does he/she have a trusted expert to consult with?
Day 12
5mg at 0807 am
Weight 267.6
20oz coffee and 6oz Diet Coke, had to go to a veteran board hearing and then to ft Carson for some military Id stuff .. I’ve not had lunch today, not much of an appetite but dinner tonight is gonna be a 18oz ribeye, some more of those Costco devil cookies And 500mg metformin
**note @ oo12, that’s 12:12am I ate a avocado on a non carp tortilla .. before I went to bed..I dunno it just seemed to be the thing to do :).
Still no side effects and I’m walking longer distances with little or no shortness of breath.
I sometimes laugh when I think..are they tricking me and I’m taking a placebo.? And then I walk a .5mile and feel normal..so it’s the real deal..
Until tomorrow as of now being back on post it’s a “hurry up and wait”.
Until tomorrow have a awesome day
Dave
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1 ReactionSounds like you are doing well Sir. I like your enthusiastic attitude. What branch of the military were you in? How's Murphy doing with all this? Are you making him walk more too?
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1 ReactionHi and thanks for your response. My husband is seeing a cardiologist at the end of June for the first time. He's 74 and has struggled for years. An internist I saw for something else agreed to see him and that's how he first got diagnosed. His GP knew nothing about this medical condition. He may or may not be put on this medication but I hope they try. I'm pretty sure they'll want to operate but he's kind of scared to have surgery so medication might be a better route.
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1 ReactionGood morning! I am on day 55 of Camzyos and am blown away each day at how great I feel! I feel "normal" again! Sunday my husband and I took a walk at the Field of Honor, honoring our veterans and all who are currently serving our country. I was so thrilled that I could walk the mile and a half! Yesterday I took my 2nd graders on a field trip and then played in our spring lawn bowling league and walked 7,787 steps!!!! 2.9 miles! Yippeeee!!! I am also down 7 pounds!! I am so thankful my cardiologist put me on this medication. It hasn't been easy on him. He has had to jump through a lot of hoops, but I will be forever grateful. I see him tomorrow for my 2nd ECG follow-up. Just wanted to share my good news. 🙂
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4 ReactionsPlease let us know if your ECG shows anything different. That is great news that the drug is working for you and your progress is encouraging for me - so thank you!!
I think anyone facing the prospect of having open heart surgery would be scared, @chris7121. I was for sure! It's important to learn all you can about HOCM and to have an expert in treating it. The end of June sounds so far away before you learn if he qualifies for Camzyos. If he does qualify for Camzyos, have you started a list of questions to ask the new cardiologist? If he does not qualify for the drug, do you have a list of questions for that too?
@kelliw, you're like the "poster child" for positivity, enthusiasm and encouragement! Your zeal is reflected in your words and outlook. I am so excited for you that you are doing so well. Looking forward to hearing back from you after your echo. Thanks for sharing your good news 🙂
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