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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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Thanks for your updates. Very helpful. I didn’t know the elevation thing was a thing. I used to get the symptoms at my former workplace coming off of the escalator. Drs wouldn’t say anything about that. Hmmmmm
Well, you made it one week!
So far so good. I'm happy to hear you do not feel any adverse side effects to the Camzyos thus far. June 2 is just around the corner. Hoping all the tests they plan to do all go well with only good results. Be sure to write down any questions you have to take with you so you don't forget. I think we think we can remember, but then we forget when we get there!
I am not sure having a "smoothie" at 9pm with 100mg of caffeine has anything to do with not sleeping...but maybe? It's only 5mg more than a regular cup of strong coffee. At 9 o'clock at night. Hmm🤨 Just sayin'.
Maybe it's a good thing it is raining there, being up in higher elevations may not be the right time yet. Wait to see what your doctor says? Maybe let him/her give you to go ahead to mountain goat first? Do you know what tests they will be doing? Lab/x-ray etc?
Till tomorrow, Sir.
Labs, echo and general exam I understand is what is happening I will post report
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1 ReactionDay 8
5mg at 0807am
Weight 266lb
No coffee, but w/glass of cherry juice
I’m about to have my first cup it’s 1300.
So about 1900-2200 I felt dizzy, it could have been I didn’t eat until late, but I’m thinking “side effect”. It didn’t last long nor was it severe but it was there. dinner was oven baked fried chicken, mashed taters ..the dizziness passed and all seemed well, I did spend the day going up and down stairs doing laundry and essential household duties. Today I feel absolutely normal. I’m not sure what’s going be on the lunch/dinner menus.
So I have noticed 1 thing which has been happening every night.
1. I sleep solid
2. I wake before my alarm (0730)
I don’t set an alarm for waking I set it to take med same day every time.
3. I have vivid dreams every night, yes sometimes I had dreams but never every night.
500mg metformin to be taken at dinner, on Monday I’m going to start light weight training at planet fitness, nothing heavy but I should be able to go 30min
I’ll see y’all tomorrow
Have a awesome day
Dave
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2 ReactionsI see that @kelliw felt dizzy too...I would be sure to mention that at your visit. You are being so thorough here on Connect, I'm sure you have it written down someplace that on day 7 ______________ (fill in the blank) happened, so this information can be charted.
Sure glad to hear the dizziness was short lived. That would be scary if you were up on a ladder or riding a motorcycle or whatever. Take it easy @starbuck41 when it comes to lifting weights. You sound like you are chomping at the bit to get back to living life again! That's a good thing. I can't wait to hear what you decided to have for dinner 🙂
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2 ReactionsHi Dave-My dizziness came on during the second or third week and last for a week or two. Now it is completely gone. One day was scary-I was in my classroom, with my students and felt like I was going to pass out. I was sitting down but the room started spinning. I was able to call the school nurse and she had me lay down on the floor with my feet up on a chair, then sit up and drink water. It went away and I didn't pass out luckily. So glad that is gone! I am going to start at 24 Hour Fitness next week too!
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3 ReactionsHappy Friday! I had my 2nd ECG Wednesday, and usually the technicians don't say a word about what they see, but when she was almost done, she said wow! This must be a miracle drug because everything looks FANTASTIC! I was so happy! I go for the follow-up with the dr., next Thursday, so hopefully he will say the same thing! 🙂 My school had our Jog-A-Thon fundraiser today, and I was able to walk with my kids for the whole 1/2 hour!!! Yippeeee!!!
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2 ReactionsMy exact symptoms, dizzy spin, I hope it’s just a 1 time thing, how long have you been on Camzyos?
Dave
I have been on Camzyos for 49 days. I am feeling great now!
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3 ReactionsFour days ago I started on Camzyos. So far I have been impressed with the followup from the the assigned pharmaceutical company with their REM specialist that will be sending me the Camzyos. I also feel fortunate that I have access to Washington Univ. where they have a department just for hypertrophic cardiomyopathy. My present cardiologist had been chairman of that department and now is chairman of the cardiology dept. I have obstructive HCM. I did not see a cardiologist until two years ago as I thought that when I felt debilitated from lack of oxygen and energy while walking, pressure in my chest and burning pain in my neck was due to summer allergies and not a heart issue. The allergist I finally went to listened to my heart and told me to see a cardiologist. I was fortunate that my first cardiologist, who was planning on retiring, was aware that Wash U. was part of the Camzyos original trials and after he had me take many medical tests was confident I would qualify for the drug. It is early days but I have great hope for the success of this drug. We are definitely a small group who have qualified to take this new medication.
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