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Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
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How bizarre! Do you think this is a side effect of Camzyos @kelliw?
I can't wait to hear if anyone else is using CBD oil and taking Camzyos and can't wait to hear what you hear back from the specialty pharmacist!
Do you think you did something to your foot since school started and you are probably running around like your hair is on fire? If it keeps up like this maybe you should see about getting an x-ray?
Hi Debra-I don't think my foot and ankle pain is a side effect of Camzyos because it just started a couple of weeks ago. But it is a bummer for sure. I do think I am going to get an x-ray. I may have hurt my foot in aqua class or pickle ball. I have definitely been running around like crazy!! The specialty pharmacist said there isn't any drug interaction with with oral or topical CBD, so I am going to try it on my foot! 🙂
Good morning! Yay that you have started! I am really hoping you will feel relief quickly! I did! It has been a life changer. I started March 30th. I have my life back! I am so happy you started sharing your journey with all of us. This group has been such a great support! Keep us posted! 🙂
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2 ReactionsThanks so much.
I am not feeling well on Camzyos and am really curious about your experience!
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1 ReactionDefinitely let your doctor's office know how you are feeling. How are you not feeling well? There might be others who have had the same reaction. My only side effect had been feeling very tired but once my dose was lowered that effect disappeared.
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2 ReactionsI am sorry to hear you are feeling unwell, @whidbey.
@nbs has good advice for you, and I would also suggest you let your cardiologist know what is going on and that you feel crummy.
Hopefully other Camzyos members can chime in with their experience and share and compare. I have learned so much from them and can only imagine how you must be feeling...a month in and not doing so great. You just began taking it recently, like last month, correct?
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1 ReactionI am in month 4 of trying Camzyos. It seems to have a negative effect on exertion symptoms - the recovery is longer and symptoms come on abruptly. I have asked my cardiologist if I can stop taking it as I feel no benefit. Now waiting to hear from the prescribing cardiologist to stop and go back to Rythmodan. On the bright side during that same conversation Dr Ong is going to co-ordinate my surgery for septal myectomy and mitral valve repair. Fingers crossed it happens before Christmas 🤞🤞
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3 ReactionsUpdate
I stopped taking Camzyos 5 days ago since I was feeling even more tired and anxious on it. Today I feel better, just a bit more general muscle tightness and soreness than usual. My blood pressure medication is helping my heart stay as healthy as possible until the Camzyos is out of my system. Up to 30 days is what I read. Is that correct?
Hello and thank you for your input. I’m curious about the funding you mentioned because I too received a foundation grant for $10,000 and was told that this grant would cover 2 months since the cost of 5 mg of Camzyos every day is $5000. How is it that your grant covers the cost for a year? I will be looking for grants continuously I guess for as long as I take this drug. Sigh.