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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 22 2:38pm | Replies (736)Comment receiving replies
Hello all, my name is Joy. I'm so glad I found this group.
When I started Camzyos 5 mg months ago I felt as if I no longer had HOCM. I could even walk up hill a bit and continue walking (mostly flat surfaces) for over an hour. I hadn't achieved this for years. I had and continue to have much more energy than before Camzyos but the HOCM gone feeling did not last. After losing that I asked to move up to 10mg. It has helped me remain productive but I can't predict how I will feel from day to day. Somedays the weakness, pounding, fluttering heart, odd head/body sensation return. I have learned to avoid all but one cup of coffee, large meals, icy drinks, and cannot allow myself to get upset (have had to limit exposure to media). In my case absolutely no alcohol and less bending over (housework, yard) are restrictions that also SEEM to help. I just don't know what to expect day to day. My ECHO numbers are all over the place. In addition to HOCM I have severe mitral valve regurgitation. Camzyos doesn't help with the latter. The good news I want to report is that a wonderful pharmacist, Mark Froelich, with Optum Specialty RX with the Camzyos.rems program, informed me that there is a SSRI, Lexapro, that is NOT contraindicated on Camzyos. I've asked my PCP to verify and prescribe if possible. I am excited that I may be able to control anxiety and depression like I did prior to Camzyos when I was on Prozac. If anyone else has learned that Lexapro is or is not the permitted wile on Camzyos, please respond. Apologies for the length of this.
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Hi @quinn, I'm glad you found this group too. I see that you have posted in the Hypertrophic Cardiomyopathy group before. It sounds like you have had to deal with this unpleasant condition for quite some time now. You mention you have been on Camzyos now for five months with some positive benefits, and then also not so much in other areas. I had to have open heart surgery for my HOCM, so I can't speak to the benefits or risks of this new drug, but this group, the Camzyos group? They are champions! They share their stories, share their ups and downs, share the negative as well as the positives of taking this drug. I hope you are able to read all the wonderful posts these brave people have shared for the benefit of others in order to help. I mentioned I had HOCM and open heart surgery. I also had a MVP/mitral valve prolapse with regurgitation as well as SVTs, PVCs. My doctor said my murmur was a 5...you could almost hear it just standing next to me. After surgery, the MVP and regurgitation practically disappeared. Gone. Just like that. Since we are all different and respond different to surgery, medication or whatever, I am just sharing that mine went away. Today it is very tiny, and pretty much inconsequential per the cardiologist. HOCM causes so many issues within our heart system. I know you were asking about taking something to control the anxiety/depresion you experience, and I guess my response to you is that perhaps, as the Camzyos continues to work, some of those icky anxiety feelings we get with HOCM will start to decrease? Hopefully a member who has experience with that aspect will chime in. In the meantime, I'm so glad you found this group. When will you find out if your doctor will be able to prescribe Lexapro?