I find that I sleep a lot. Not sure if it’s the HCM or the camzyos. I sleep at least 10 hours a night. (Lucky I’m retired!) I’m not full of energy but I’m not dragging either. Since taking the camzyos at night I can fall back to sleep more easily than before. Perhaps I’ll try taking it earlier in the evening as @brumasterj does.
Be well.
Hi @peggynurse. I take my Camzyos at night. That was the recommendation from my cardiologist and also from my nurse case manager. The reasoning was that side effects can include such things as drowsiness, dizziness, and fainting. In my case I have been taking omeprizole, which apparently can increase the severity of these side effects, but my dosage is low, so I was given the ok to stay on it when taking Camzyos. But to be safe, they suggested I take the omeprizole in the morning and the Camzyos in the evening so that if there is a spike in the side effects, I will be more likely to be asleep instead of at the wheel when I'm hit by drowsiness, dizziness or fainting. So far I have not noticed any side effects from the Camzyos whatsoever, even with the omeprazole in on the act. That's my experience, but I would encourage you to ask your cardiologist, nurse case manager, or pharmacist before making changes. (Maybe you are a nurse knowledgeable about such things (@peggynurse?) but I won't make assumptions.)
I find that I sleep a lot. Not sure if it’s the HCM or the camzyos. I sleep at least 10 hours a night. (Lucky I’m retired!) I’m not full of energy but I’m not dragging either. Since taking the camzyos at night I can fall back to sleep more easily than before. Perhaps I’ll try taking it earlier in the evening as @brumasterj does.
Be well.
I take mine between 8-10 PM not exactly 9:00
Im pretty active so when i had my two heart failures back in oct and nov it really slowed me down!
Basically 2 steps on a step ladder was too much
Once i got on Camzyos i got my energy back and pretty much doing everything i was doing before the heart failure! Im easing into things 14 miles bike ride avoiding strenuous hills
Even with my activity levwl increasing im still gaining weight!
Up 13 lbs in 6 weeks of being on camzyos:(
@suzict Yes! omeprazole is one of the medications that is specifically warned about. As I said, I had several conversations with my cardiologist and my Camzyos REMS program nurse-case-manager. I'm not sure whether it was due to a relatively small dosage of omeprazole, or if the effects of omeprazole had maybe been found to be not as significant, or if taking omeprazole in the morning and camzyos at night, or all of the above, or none of the above (that's way above my pay grade to actually understand), the advice I got was to go ahead with the omeprazole/camzyos and to watch for anything. After about a year and a half, I've had no ill effects whatsoever. Hoping it continues like that, but if not I'll fight to keep camzyos and change anything else that needs changing.
@suzict Yes! omeprazole is one of the medications that is specifically warned about. As I said, I had several conversations with my cardiologist and my Camzyos REMS program nurse-case-manager. I'm not sure whether it was due to a relatively small dosage of omeprazole, or if the effects of omeprazole had maybe been found to be not as significant, or if taking omeprazole in the morning and camzyos at night, or all of the above, or none of the above (that's way above my pay grade to actually understand), the advice I got was to go ahead with the omeprazole/camzyos and to watch for anything. After about a year and a half, I've had no ill effects whatsoever. Hoping it continues like that, but if not I'll fight to keep camzyos and change anything else that needs changing.
I’m takng my first dose of Camzyos tonight and i’m really nervous. My body is sensitive to medications and i don’t know how I will react. I wish I had a buddy with more experience nearby. 🤗
I’m takng my first dose of Camzyos tonight and i’m really nervous. My body is sensitive to medications and i don’t know how I will react. I wish I had a buddy with more experience nearby. 🤗
Just listen to your body and report any side effects
Been on 5mg for 6 weeks now.
Some of my side effects for the first fee weeks
Feeling of syncope especially after eating
Palpitations come and go
Increase of urination
Probably because of water intake
Alcohol intolerance
Weight gain
Feeling of puffiness in upper body
After 6 weeks
Syncope is gone
Alcohol intolerance still the same 1 beer and im done
Puffiness still there
Weight gain still gaining
Palpitations still come and go though not as frequent
Urinating frequency under control
Since im active person
I have gone in 6 weeks time from couldnt ride my mountain bike to 14 miles
Nov 0 miles
Dec 41 miles
Jan as of today at 101 miles
Miracle drug for sure
In three weeks of being on the camzyos my gradient
Went from 122 mmHg
To 31 mmHg
Just listen to your body and report any side effects
Been on 5mg for 6 weeks now.
Some of my side effects for the first fee weeks
Feeling of syncope especially after eating
Palpitations come and go
Increase of urination
Probably because of water intake
Alcohol intolerance
Weight gain
Feeling of puffiness in upper body
After 6 weeks
Syncope is gone
Alcohol intolerance still the same 1 beer and im done
Puffiness still there
Weight gain still gaining
Palpitations still come and go though not as frequent
Urinating frequency under control
Since im active person
I have gone in 6 weeks time from couldnt ride my mountain bike to 14 miles
Nov 0 miles
Dec 41 miles
Jan as of today at 101 miles
Miracle drug for sure
In three weeks of being on the camzyos my gradient
Went from 122 mmHg
To 31 mmHg
Thank you so much for sharing your experience. Your improvement is amazing. I took my first dose last night and was awake most of the night feeling things changing in my body. I could feel my heart relax and the tightness and pain that I usually feel when I get up in the morning, wasn’t there this morning I do have a bit of a headache. Do you increase your water intake with this medication and what are you going to do about the weight gain? Have you talked to them about that?
Thank you so much for sharing your experience. Your improvement is amazing. I took my first dose last night and was awake most of the night feeling things changing in my body. I could feel my heart relax and the tightness and pain that I usually feel when I get up in the morning, wasn’t there this morning I do have a bit of a headache. Do you increase your water intake with this medication and what are you going to do about the weight gain? Have you talked to them about that?
Yes i had the frontal head aches that would come and go less now.
The palpitations would wake me up at night thinking my heart just stopped that has subsided
I talked to my primary doctor and he thinks im retaining water
I will talk to the cardiologist on the 4 th but they are aware of my weight gain.
I was told to drink at least 62 oz of water per day
If i dont drink enough my heart will have palpitations
It will take getting adjusted to the meds bit make sure to talk to ykur cardiologist on ykur symptoms
Keep a daily log
BP
O2
Weight
Exercise
Physical and mental changes
Hope the meds treat you as well as they have treated me
I take mine at night also, When I started, I did morning because I wanted to be alert for any potential side effects. I transitioned to nights and have taking my dosage at night with no issues for 8+weeks now.
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I find that I sleep a lot. Not sure if it’s the HCM or the camzyos. I sleep at least 10 hours a night. (Lucky I’m retired!) I’m not full of energy but I’m not dragging either. Since taking the camzyos at night I can fall back to sleep more easily than before. Perhaps I’ll try taking it earlier in the evening as @brumasterj does.
Be well.
Hmmm Interesting...I was told Omeprizole was a NO with Camzyos!? They prescribed me Pantoprazole instead!
I also take the Camzyos at night.
I take mine between 8-10 PM not exactly 9:00
Im pretty active so when i had my two heart failures back in oct and nov it really slowed me down!
Basically 2 steps on a step ladder was too much
Once i got on Camzyos i got my energy back and pretty much doing everything i was doing before the heart failure! Im easing into things 14 miles bike ride avoiding strenuous hills
Even with my activity levwl increasing im still gaining weight!
Up 13 lbs in 6 weeks of being on camzyos:(
@suzict Yes! omeprazole is one of the medications that is specifically warned about. As I said, I had several conversations with my cardiologist and my Camzyos REMS program nurse-case-manager. I'm not sure whether it was due to a relatively small dosage of omeprazole, or if the effects of omeprazole had maybe been found to be not as significant, or if taking omeprazole in the morning and camzyos at night, or all of the above, or none of the above (that's way above my pay grade to actually understand), the advice I got was to go ahead with the omeprazole/camzyos and to watch for anything. After about a year and a half, I've had no ill effects whatsoever. Hoping it continues like that, but if not I'll fight to keep camzyos and change anything else that needs changing.
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1 ReactionGood to know! Here's hoping continued success for both of us!
I’m takng my first dose of Camzyos tonight and i’m really nervous. My body is sensitive to medications and i don’t know how I will react. I wish I had a buddy with more experience nearby. 🤗
Just listen to your body and report any side effects
Been on 5mg for 6 weeks now.
Some of my side effects for the first fee weeks
Feeling of syncope especially after eating
Palpitations come and go
Increase of urination
Probably because of water intake
Alcohol intolerance
Weight gain
Feeling of puffiness in upper body
After 6 weeks
Syncope is gone
Alcohol intolerance still the same 1 beer and im done
Puffiness still there
Weight gain still gaining
Palpitations still come and go though not as frequent
Urinating frequency under control
Since im active person
I have gone in 6 weeks time from couldnt ride my mountain bike to 14 miles
Nov 0 miles
Dec 41 miles
Jan as of today at 101 miles
Miracle drug for sure
In three weeks of being on the camzyos my gradient
Went from 122 mmHg
To 31 mmHg
I go back Feb 3 for new imaging
Good luck and take it one day at a time
Thank you so much for sharing your experience. Your improvement is amazing. I took my first dose last night and was awake most of the night feeling things changing in my body. I could feel my heart relax and the tightness and pain that I usually feel when I get up in the morning, wasn’t there this morning I do have a bit of a headache. Do you increase your water intake with this medication and what are you going to do about the weight gain? Have you talked to them about that?
Yes i had the frontal head aches that would come and go less now.
The palpitations would wake me up at night thinking my heart just stopped that has subsided
I talked to my primary doctor and he thinks im retaining water
I will talk to the cardiologist on the 4 th but they are aware of my weight gain.
I was told to drink at least 62 oz of water per day
If i dont drink enough my heart will have palpitations
It will take getting adjusted to the meds bit make sure to talk to ykur cardiologist on ykur symptoms
Keep a daily log
BP
O2
Weight
Exercise
Physical and mental changes
Hope the meds treat you as well as they have treated me
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Like -
Helpful -
Hug
2 ReactionsHi,
I take mine at night also, When I started, I did morning because I wanted to be alert for any potential side effects. I transitioned to nights and have taking my dosage at night with no issues for 8+weeks now.
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2 Reactions