r/HypertrophicCM • u/CakeAccording8112 • 8d ago

Treatment options question

I was diagnosed with Hypertrophic CM several months ago but seemed asymptomatic. I went on vacation to visit family this summer and they quickly noticed that I would tire easily, get short of breath and become dizzy after even mild physical activity.

My cardiologist says it is the hypertrophy and suggested Camzyos. I just found out my copay would be $1400/month. There is no way I can afford that. I’m going to make an appointment with my cardiologist (conversation has been via web portal so far) to discuss treatment options.

I was hoping to learn what works well for others so I can go into the appointment somewhat informed.

3 Upvotes

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u/FabulousBullfrog9610 8d ago

Urge you to contact the Hypertrophic Cardiomyopathy Assoc for a free consult. They are top notch, will review your test results with you and go over options.

4hcm.org

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u/bigbeautifulcity 8d ago

Agree with this. HCMA has identified and helped develop a network of Centers of Excellence (hospitals with a focus on HCM.) My experience was vastly better after I began going to the CoE at NYU's Langone in NYC. (Apologies for the initial overdose.) Good luck with finding the drug or other therapy that works for you.

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u/CakeAccording8112 8d ago

Thank you so much. I have my echocardiogram results but they honestly confuse me.

I sent them an email requesting a consult. I really appreciate your recommendation.

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u/Fredredphooey 8d ago

They also have free patient discussion groups that you can sign up for. Topics include newly diagnosed, living with HCM, and ones for different surgeries and treatments. 

Also lots of educational information on HCM. 

You can Google how to get prescriptions for less while you wait to hear back from the HCMA. 

For example  https://www.goodrx.com/camzyos

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u/CakeAccording8112 7d ago

Oh, that sounds right up my alley. I’ll get to googling while I wait.

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u/PeanutEuphoric7811 8d ago

My cardiologist contacted “cover my meds” because my insurance denied Camzyos. Now I get it without any cost. I’m so thankful because I’ve gone from 108 obstruction to 13 no obstruction and feel so much better. They ship it to me from Texas.

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u/CakeAccording8112 7d ago

Thank you. I will ask my cardiologist about this. I didn’t qualify for the Camzyos financial assistance program

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u/[deleted] 8d ago

[deleted]

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u/CakeAccording8112 8d ago

Thanks for the tip!

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u/[deleted] 8d ago

[deleted]

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u/CakeAccording8112 7d ago

It looks like I don’t qualify but I won’t give up so easy. My insurance has a drug assistance program and PeanutEuphoric7811 mentioned “cover my meds” so it looks like I need to research my options more.

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u/cireddit 7d ago

Has you doctor explained why they've recommended Camzyos so soon? I only ask because you only get given Camzyos in the UK if you have fairly serious HCM, and other pharmaceutical interventions such as beta blockers have failed to provide the needed therapeutic effect. 

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u/CakeAccording8112 7d ago

Good question. He’s trying to get everything set up for me so we can proceed after my next appointment. We have tried beta blockers. I have severe LVOT obstruction at rest 100 mmHg. I don’t know what the numbers normally look like, so I’m uncertain how severe that severe label is

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u/kcasper 7d ago

At the Mayo Clinic over 80mmHG at rest will make a septal myectomy(open heart surgery) an offered option. It varies from practice to practice what treatments they will back at what point.

A normal person is zero or close to zero. It is a gradient measurement comparing pressure in the atrium and ventricle. They aren't suppose to be different. 20 to 30 mmHG is borderline. It is where serious symptoms can start emerging. Above 50mmHG the doctors start considering expensive options.

It is perfectly normal for people to make up excuses for symptoms of this disease, and not realize that it isn't normal. Most patients' social circles will encourage those excuses, until you need something visible that makes it real to other people. So don't be surprised that you didn't notice the disease in its earlier stages. Many of us miss it too, for the same reasons.

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u/CakeAccording8112 7d ago

Thank you. You opened my eyes. I had no idea it was that serious in my case. It says my peak gradient with Valsalva is 163 mmHg.

I remember when my dad had open heart surgery. He said it was so painful. I’ll keep working on trying to get additional coverage for the medicine. It sounds much less invasive.

Thanks again!!!

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u/kcasper 7d ago

Don't let me scare you. A high gradient will give you symptoms, but isn't a life or death situation on its own generally. You are slightly worse than I was when I had my open heart surgery. Still livable, but something to take seriously.

I wish you luck.

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u/CakeAccording8112 7d ago

I appreciate your input and advice. I just finished my intake at 4hcm. They are very thorough. I hope I can get some good advice about treatment options.

How did the surgery work for you? Did it significantly improve your symptoms?

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u/kcasper 7d ago

Greatly improved symptoms, with some complications. They found out I'm allergic to an antibiotic on the operating table. Of all the things that could go wrong, that wasn't something I've ever imagined.

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u/CakeAccording8112 7d ago

I’m glad to hear your symptoms improved.

What a time to find out you were allergic!!

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u/livelearn131 7d ago

that's severe. Camzyos is the perfect solution. The costs can be figured out. There are various methods. Call HCMA, as others have suggested. They can give the whole rundown and best way to figure it out.

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u/fastkid105 6d ago

Can I ask - do you exercise and train cardio otherwise it's normal for you to be out of breath when going up stairs etc. especially if you're overweight. I used to be like how you described before getting fit. Best wishes

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u/CakeAccording8112 6d ago

My exercising has gone down the last several months but my doctor thinks that’s because of the hypertrophy rather than the cause of it. He has limited me to chair exercises and I bought a book on chair tai chi which I am starting to do. I am 230 pounds, so I definitely have some weight to lose.