Infections while on Camzyos?

I have not.

I have not had any

I have not either.

I have been on Camzyos for almost a month and I feel like I have a UTI , I’m 62, and this is the second UTI I have ever had in my life and the last one was 30-35 yrs ago, I feel it is related

I have read that there is a study indicating possible connection between camzyos and UTIs, I just know that is the rot cause of my UTI, I have a call into the Heart Failure clinic and I am going to try to find the study and read it

I’m being treated for a UTI now. I’ve been on Camzyos since April with no apparent side effects. However, I started Diltiazem 2 weeks ago, and from what I have researched, it and other calcium channel blockers can make you more susceptible to UTIs and incontinence. Waiting to hear back from my doctor about whether to continue with it. I had not heard about the Camzyos - UTI connection.

@lisa4585 I don’t take anything else associated with UTI, I spoke with the HF center and the NP wouldn’t even talk to me, she had her secretary tell me there is no way Camzyos can be associated with UTI, I’m mad about it. She is wrong. I told the secretary to tell her she should be more concerned, as it is very dangerous to have infection while on Camzyos, she said call your primary. I did the office and was told they were going to let her know as urgent, not a single word back. This is why I’m going to Cleveland in March, my cardiologist refuses to do an urgent consult so I can’t get in until March. I am a Dr and have completed the NP program at George Washington University and I hate how the medical profession has become

Wanted to add this from a simple 2 sec google search, I fully intend to send to my Heart Failure NP and my cardiologist. ugh. They will end up killing me before I ever make it to Cleveland. I soooo dont trust them.

Yes, a urinary tract infection (UTI) is a possible side effect of mavacamten (brand name Camzyos).
While the most common side effects are dizziness and fainting, UTIs have been reported both as a common side effect in some sources and as a potential new adverse event signal in real-world studies.
Common Side Effects
In clinical trial data and general information, UTIs are listed among other non-serious, but common, side effects that may not require immediate medical attention unless they become bothersome or do not go away.
Other common side effects include:
Headache
Dizziness
Nausea
Fatigue
Upper respiratory tract infections
When to Seek Medical Attention
It is important to contact your healthcare provider if you experience symptoms of a UTI, which may include:
Burning or stinging when urinating
Painful or frequent/urgent urination
Pink or bloody urine

That has to be so frustrating! And also infuriating to be dismissed in those ways! & so worrisome. I’m sorry you’re not getting better care.

I wonder if the specialty pharmacy that you are getting your Camzyos from would be more responsive? The pharmacist team at the specialty pharmacy I am getting mine from has seemed very attentive, and expressed availability to talk with me at any time about any concerns, even 24/7.

Once you are taking Camzyos there is that “Patient support program “ — “created to help support you and answer questions during your treatment“ they have what they call a nurse navigator , who supposedly can help answer questions you have : 855-226-9967 -
8 AM to 8 PM Eastern time Monday through Friday. I have not used that resource so not sure how exactly that works or if it’s any good or not?

I had planned on calling them tomorrow, I looked on my chart, my PCP left a note saying I talked to her, I did not, she didn’t have a response, and the NP left a note saying the heart failure clinic spoke with their pharmacist and she said no way is Camzyos associated with UTI?? I mean? What do I do with this mess? They will get a piece of my mind on the 5th when I have my first ECHO and then meet with that pharmacist. It’s crazy. Thanks for the number too, I have it, somewhere lol