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Feeling tired all the time- One month on higher dose of Camzyos
Hi. 67 yo male. Obstructive HCM. During my last Echo my cardiologist increased my Camzyos does to 10mg as my gradient had come up (I am dynamic). Its been almost a month- my next Echo is 3/31. I have felt more tired on this higher dose daily (with a three day in a row break last week). But dragging every day. No signs of HF (no weight gain, shortness of breath etc). Has anyone else experienced this side effect from going to the higher dose? I had no side effects on 5mg- but i remained symptomatic (but not as tired as I am now). some have told me that this will go away eventually for us 'slow responders' but its been quite the battle day in and out. thanks! Appreciate any thoughts feedback.
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@rbjrssdkmd14680zxykt Please look into genetic testing for HCM. If they can find your naughty gene, all of your blood relatives can be tested to see if they have it as well. My gene is among the undiscovered, so my blood relatives know about my HCM and many are monitored with scheduled periodic echoes. There were 123 known HCM genes studied for my testing. Here is a link that you may find helpful: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/genetic-testing-and-cardiac-conditions.
You are a retired nurse, it must be absolutely amazing to think about all of the advances in medicine and patient care you have experienced during your career.
My gradience went from 120 to zero on 10 mg camzyos. The cardiologist was pleased my EF number was also much improved.
I plan to continue. I am 70 yo
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1 ReactionHi yes I went from 2.5 this made me tired but now on 5 mg I’m worse do not feel like moving light headed.
Hope we do get usto it as it’s not a good feeling all the best .
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1 Reaction@reeha37 I am sorry to read that Camzyos is giving you side effects. I found that you posted a little over a week ago that you had burning in your mouth, has that been resolved?
I learned from reading discussion posts about Camzyos that three things can happen. It's a miracle drug and life returns mostly to normal. It does nothing or has too many side effects that compromise the quality of life. Lastly, it works well and then doesn't work.
I was never prescribed Camzyos, I hope that those who experienced fatigued will share their experiences, especially if the fatigue ceased and how long that took. Everyone is different, so each person would have their own tale to tell.
Have you discussed this with your doctor?
@walkinggirl
Yes I have talked to my doctor and I am taking it for 12 weeks the 5 mg then have echo see how it’s going if it improving things iv been on 2.5 for 4 months also have blocked aortic valve but I cannot have any operations so see how we go x
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1 Reaction@walkinggirl
Also sorry no I still have the burning tongue headaches tiredness but give it a go as I cannot be operated on x
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1 Reaction@reeha37 Are you receiving treatment at a COE (Center of Excellence)? There are people in these discussion groups who benefitted from creative ways of doing what seems like the impossible. How did it come about that you cannot be operated on?
Because it’s all gone to far and they cannot keep my blood pressure up.
My doctor said it to dangerous could end up dead or massive stroke so not doing that
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1 ReactionI’m in australia
@reeha37 Please contact 4hcm.org, the Hypertrophic Cardiomyopathy Association. They work world-wide and I encourage you to see if they have suggestions for you. You can contact online.
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