Anyone take new drug Camzyos (mavacamten) for HCM?

I’m so irritated
The red tape is exhausting, I’m out of Camzyos no one can tell me what the 1/2 life is while I wait for it to get fixed.
Total days 35
5mg at 0800
Wt 267.3
Male 59yr
20oz coffee and 10oz of ice cold Dr Pepper. I’ve had absolutely zero adverse effects and the shortness of breath has diminished significantly. I haven’t changed my diet but I’m more active now because I’m feeling better..hopefully within the week I’ll get my meds and start this all over again.
I know this sounds weird but since starting Camzyos I dream vividly every night., I used to not.. anybody else?

Well I’ll pick this up when I get my meds and start again..

Have awesome days y’all
David

Good Morning!
I've purposely been holding off on making any statements about how I'm doing on the lower 2.5mg dose because I wanted to make sure it wasn't just in my head. I certainly had a bit of anxienty over changing the dose because I didn't want to lose how amazing I was feeling, and also recognize that emotions/fear are not reality. I've been on the lower dose for 3 weeks now and while I still feel pretty good in general, I've defintely noticed that I start to get out of breath after about 1/2 mile of walking. Thankfully no chest tightness like before being on this drug, but defintely have lost some of my new found "omgIfeelGreat!"
I'm going in for my next echo on friday so we'll see.

My LVOT was 75 and dropped to 8. Which I think is really good!?! But that is why he had to lower my dose. I sure hope he doesn't take me off of it! Thank you for this info! 🙂

My cardiologist goes by the book so I am hoping that my LVOT (Left ventricular outflow tract) goes to 20 or above but also in a normal range when I get my next echo. It dropped from 100 to
16 mm HG. In my google research I found this statement "LVOT obstruction is defined as a peak instantaneous gradient greater than or equal to 30 mm Hg. A gradient greater than or equal to 50 mm Hg is generally recognized as the threshold at which LVOT obstruction becomes hemodynamically significant."

So, I was hemodynamically significant. I have never been called that before all of this testing.

Good morning! I feel the exact same way, being on 2.5mg now. I was only on 5mg for 62 days and was feeling SO GOOD! I was really disappointed to be switched so soon. I definitely feel much better than before I was on it, but yes, more tired and a bit winded. I had my echo Monday. Will meet with the dr. next Monday. Will report what he says. It is so awesome to hear how other people are doing on this journey! 🙂

It will be interesting in three weeks to see what my next echo shows. I don't feel as energetic on the lower dose as I did on 5 mg. My breathing is heavier walking up stairs and walking up hills. However, the weather is now hot and my OHCM is always worse in hot weather. I do feel better than when I wasn't on camzyos.
I am glad you are feeling well!! It is encouraging for all of us to know this drug works. In the original study they waited 30 weeks to determine if it was working on the patients in that study.

Yes, thanks for that explanation. I like my cardiologist very much but he is not a big on details. (Not that I would necessarily understand them!)
I will like to hear that you are able to stay on Camzyos. It has certainly been a "rescue" for me. I am very appreciative of this forum and all of the helpful (and educated) support it provides.
I am not checking in to this forum as frequently as I should to read helpful updates. That is testament to how well I am feeling!

@marilynsaint, this is why Mayo Connect is so special. These folks just gave you the best information possible, something that not many, including myself, knows. I hope you take good notes with you to your appointment and that your new cardiologist is specialized in HOCM and Camzyos. Sounds like from what @nbs, @jaymaysea and @captainterry have stated, you need to not only learn as much as you can to help yourself, but that you will also need to have your doctor working with you just as much. I hope you come back and let the group know how things turn out. Were you surprised when you were diagnosed with HOCM? Were you having symptoms that were bothersome?

Thanks for your info. I am waiting to hear from the new cardiologists office for my appointment. This will give me some good background so I can ask the right questions.

Short answer to Costs:
Just gone into my second year on Camzyos. You will need to access an experienced HCM cardiologist and SPECIALTY pharmacy (usually by phone or on line). Your cardiology office or staff worker they may use should help set up with the medical background info required. This is all about getting registered in the REMS program for this new drug. Hopefully you have some form of supplemental pharmacy insurance also (in addition to medicare).
The manufacturer (BMS), your supplemental ins., Medicare, and specialty Rx will work out the end cost to you. This happens behind the scenes and is somewhat a mystery ???
CVS Specialty Pharmacy is my dispensary by overnight delivery and has been very good to work with. You will talk with your selected pharmacy every month so they can check on you before sending your next 30 capsules.
NOW here is the main thing if you are on medicare ..... contact Healthwell Foundation (Google them and call). You probably will be elegable for a $10k per year grant to cover Rx deductables and copays. You do not not have to be poor .... the personal income limit is somewhat over $150,000 per year. Go to their web site and then give them a call.
Relax, be diligent, positive, and be hopeful during the process. Camzyos is worth it if it works for you!