1. < Hypertrophic Cardiomyopathy (HCM)
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Anyone have slow results on Camzyos?

Posted by jhark @jhark, May 13 7:28am

Hello,
I’m a 48 year old female newly diagnosed with OHCM just over 6 months ago. On Camzyos for 18 weeks now. Mostly 5mg but last month and a half on 10mg. Very hopeful for results because I’m feeling a ton better. Less shortness of breath. I can take normal walks without feeling like I’m going to pass out. All things we thought in the past was asthma. The problem is there is no change on my obstruction. The Dr is still hopeful and we are giving the 10mg more time for now. The questions is, has anyone had anything similar and it worked later in treatment? Hoping there is still a chance of this helping instead of surgeries. Also, if not, what is everyone’s experience with the Alcohol Ablation? Thank you!

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Linda, Volunteer Mentor | @walkinggirl | May 15 8:48am
In reply to @jhark "@jachrist sorry you have to go through all of that! I appreciate the information because it’s..." + (show)
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@jachrist sorry you have to go through all of that! I appreciate the information because it’s helpful as I’m weighing options/risks.

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@jhark Please do remember that we are all different. If 100 people tell their stories, we would read 100 unique tales. Talk to your doctor about your unique pros and risks. Let us know what is decided! BTW, my ICD, Buddy, was installed after a septal myectomy and I am glad my particular issues were resolved.

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sassyrdh329 | @sassyrdh329 | May 15 8:49am
In reply to @jachrist "@jhark For hydration try crystal light. Mix the small packs in water. A Dr suggested this..." + (show)
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@jhark
For hydration try crystal light. Mix the small packs in water.
A Dr suggested this to me and I use it all the time.

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@jachrist did crystal lite ever give you lower digestive problems ie loose stoos?

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jachrist | @jachrist | May 15 9:21am

No side effects with crystal light

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whidbey | @whidbey | May 15 2:21pm

I am currently on 15 mg and am doing so well with great results on my obstruction. It sounds like you are doing better on 10 mg and I encourage you to hang in there to see if you will improve. There was a moment when i was going to get off Camzyos because i didn't feel well and my PA adjusted my secondary medicine slightly (for another heart anomaly ) and that was the answer for my current condition. As per the hydration factor...I have learned it is a HUGE factor. I actually create a natural hydration of one freshly squeezed orange, half a lemon, a few flakes of quality sea salt and a tsp of honey. It is an amazing hydration trick. It makes such a difference on your heart to be hydrated. I also don't drink carbonation or caffeine. Good luck to you on your journey.

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