1. < Hypertrophic Cardiomyopathy (HCM)

HCM with no options for medication for relief of symptoms

Posted by rmhc123 @rmhc123, May 3 6:57pm

I have HCM (without blockage) and I am not a candidate for the new medication (Camzyoz?) and no other medications relieve my symptoms (channel/beta blockers or Lasix). I’m wondering how others manage the symptoms of fatigue, shortness of breath, and chest pain. Sometimes I can’t even make it to my mailbox without having to sit down. Other times, it’s ok. Sometimes my heart rate goes up to 120 bpm just due to getting dressed for work. It’s all very scary. I find myself becoming more anxious and definitely depressed.
Can anyone relate?

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rmhc123 | @rmhc123 | May 7 3:47pm
In reply to @emo44 "Hi @rmhc123 I have Apical Hypertrophic Cardiomyopathy (non obstructive) and during the past year persistent Afib..." + (show)
@emo44

Hi @rmhc123
I have Apical Hypertrophic Cardiomyopathy (non obstructive) and during the past year persistent Afib w rvr presented itself up until the afib my only symptom was occasional lightheadedness. The afib caused fatigue and frequent very high heart rates even with rate medication. Afib needs to be treated aggressively when you have hcm. I see a cardiologist at Mayo clinic in Rochester. At my first visit he mentioned several medications he uses if I were to develop symptoms. When afib came he sent me to the heart rhythm clinic at Mayo. The Ep I saw gave me all my options and when I asked his recommendation he said he would start with medication so that is what I did. I had to be in the hospital three days to get this drug but now feel great and have been in sinus rhythm with no side effects for 9 months now. I also have an Apical aneurysm which happens in a small percentage of non obstructive patients. If you have afib, are you being treated for it? I can't say enough good things about Mayo Clinic. You might also check out the Hypertrophic Cardiomyopathy Association online and on Facebook.

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I’m fairly certain I have had a few bouts with afib. I just don’t know how bad it is supposed to get before I go to hospital or address it with my doctor. My Apple Watch keeps up with it. I have 4% afib in some days, so perhaps that isn’t severe enough? It is so incredibly unpredictable

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peggynurse | @peggynurse | May 8 3:03pm
In reply to @emo44 "Hi @rmhc123 I have Apical Hypertrophic Cardiomyopathy (non obstructive) and during the past year persistent Afib..." + (show)
@emo44

Hi @rmhc123
I have Apical Hypertrophic Cardiomyopathy (non obstructive) and during the past year persistent Afib w rvr presented itself up until the afib my only symptom was occasional lightheadedness. The afib caused fatigue and frequent very high heart rates even with rate medication. Afib needs to be treated aggressively when you have hcm. I see a cardiologist at Mayo clinic in Rochester. At my first visit he mentioned several medications he uses if I were to develop symptoms. When afib came he sent me to the heart rhythm clinic at Mayo. The Ep I saw gave me all my options and when I asked his recommendation he said he would start with medication so that is what I did. I had to be in the hospital three days to get this drug but now feel great and have been in sinus rhythm with no side effects for 9 months now. I also have an Apical aneurysm which happens in a small percentage of non obstructive patients. If you have afib, are you being treated for it? I can't say enough good things about Mayo Clinic. You might also check out the Hypertrophic Cardiomyopathy Association online and on Facebook.

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Great you’re feeling better. What medications are you currently on?

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emo44 | @emo44 | May 8 3:32pm

I am taking dofetilide (tikosyn) and so far so good. I know antiarrhythmic drugs often stop working, but am hoping this doesn't happen. Am also taking Eliquis as is a must for Afib, especially with hcm and aneurysm.

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rmhc123 | @rmhc123 | May 8 6:35pm

I have started taking my blood pressure and it’s rather low at times. I’m wondering if I have hypotension? Also wondering why Lasix is ineffective at removing the suspected fluid around my lungs. Anyone have this experience?

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dwc62 | @dwc62 | May 13 3:17pm

My Doc had me on Bisoprolol 5mg 2x, Amlodipine 5mg, Rythmodan 100mg up to 3, Mestinom 100mg. These are the Meds I was put on to control my pain before Camzyos.

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whidbey | @whidbey | May 15 12:03am

I don't see that anyone has answered your specific question. I am sorry you are not a candidate for Camzyos since it really has helped me so much with all the symptoms you describe. I am so sorry you experience these symptoms and don't have any answers. I am concerned about your chest pain specifically and hope you tell your doctor about your chest pain. I also wonder if you ever go to ER for an ekg when you are feeling this way. Thinking of you and hoping you find answers.

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blessmyheart | @blessmyheart | Jul 24 1:44am
In reply to @rmhc123 "Thank you so much for sharing. My cardiologist specializes in HCM at Emory University. She said..." + (show)
@rmhc123

Thank you so much for sharing. My cardiologist specializes in HCM at Emory University. She said I am a possible candidate for a clinical trial study for Aficamtem, but those trials take awhile to get going and I have to meet certain requirements. She said the Camzyos is under trial now for use with patients with non obstructive HCM, but it will likely be 1-2 years before the FDA approves that medicine for use with non obstructive HCM.
She is my 2nd cardiologist and both of them agree that I likely have fluid in my lungs which is causing the symptoms, but the Lasix doesn’t help.
I appreciate your response. It can be a very isolating experience to have this disease so I am glad to have found a support group.

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I have heard good things about Aficamten. I am asking my cardio team about it too.

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blessmyheart | @blessmyheart | Jul 24 1:59am
In reply to @rmhc123 "Thank you, again, for corresponding. We have some similarities. I am actually a certified yoga teacher..." + (show)
@rmhc123

Thank you, again, for corresponding. We have some similarities. I am actually a certified yoga teacher and love walking as well. My first sign of trouble was in the Grand Canyon- I literally couldn't breathe my way out and had to spend the night!
One difference is that I do not have an obstruction and am not a candidate for any surgery. That’s why they are trying this new drug Avimaectem?- for people like me.
I’m so glad you got relief from your surgery. I was told the only surgery for me would be a new heart, but that only happens in about 5% of patients.
My greatest concern is afib. I know I have had mild versions of it, just not sure how bad it has to be to call 911 (I live alone).
Again, thank you for taking the time to reach out. It’s so powerful speaking to others who can relate.

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My situation sounds similar to yours no concerning obstruction gradient, EF “normal” and I too am inquiring about Aficamten. Have you had a cardiac MRI? This is newer diagnostic tool that is correlating extent of fibrosis with symptoms/prognosis which was eye-opening but makes a lot of sense in my case. I had a ”primary prevention” ICD for years with minimal symptoms. Last few years I’ve become way more symptomatic and more often which like others have shared significantly impacts QOL. I feel like I have lost so much of my life and dreams bcz of this so I’m inquiring about septal myectomy which I would onmy do at Mayo or see about Aficamten

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rmhc123 | @rmhc123 | Jul 24 6:18am

Hi,
I’ve become more symptomatic as well and my doctor has prescribed a stronger diuretic (Torsemide) for water retention. I just finished the clinical trial screening for Aficamten and waiting to see if I qualify. It’s a double blind study with a 50% chance of being placed on a placebo.
Where do you live and who is your provider? I’m in Atlanta and use Emory, but the study is being conducted at sites all over the country and they are actively enrolling.

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1 reply
bobbyknik | @bobbyknik | Jul 25 10:32am

Are you taking metropolol? My heart was scooped out by Dr. D'allesandro at Mass General. I was lucky. They found mine very early.

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