Entresto increase

[Cherrelleford]

Hey all.I've had my entresto increased to the middle dose 49/51. I've been on it a month now and have a review with my GP on November 4th as he was concerned about issuing it because of my blood pressure being low. It's still low, I've noticed that I get wobbly when walking and get random dizzy spells which I thought I'd finally got rid of. Has anyone else had issues when this medication has been increased?

[Lezzers]

My husband is about to start the 49/51 dose this week if the pharmacy doesn't have to order it in. I had a very long chat with his nurse yesterday about this. Entresto does lower your BP. My husband's BP is quite low anyway but he tolerates it well but his nurse has said if the dosage increase does affect him then they'll have to reconsider. We did chat about possibly taking the higher dose every other day instead of every day and she said there's no evidence to say this is effective but it's a possibility. However because this isn't licenced she would have to get written permission from a cardiologist. Perhaps you could ask your GP about that? She did also say the a BP reading in the 80's, though it's low, is acceptable if you're able to tolerate it without symptoms ( my husband's BP is often 80's/50's, 80's/40's his nurse said it's when your BP is in the 70's the it becomes a problem as it will start affecting your kidneys.

Good luck, I hope you get it sorted

[Cherrelleford in reply to Lezzers]

Thank you. I've been on the lowest dose since my diagnosis. I take a high dose of beta blockers so my blood pressure is low anyway and I usually manage. Just recently the dizziness etc has started. I will speak to the GP about it as he won't put it on my repeats til we have spoken. I've had a kidney function check and they are ok thankfully. Hope your husband manages it ok too. X

[Lezzers in reply to Cherrelleford]

Thank you. My husband has been on the lowest dose for about 2 years now and he's not been able to get to the next dose because of his BP but the consultant wants to treat him aggressively so they're upping the dose and see how that works. If he can tolerate it & his BP doesn't dip too much they're gonna try for the highest dose, so would be interested to know what your Dr decides to do for you.

Kidney function test is in hand, that might be a deciding factor as his kidney function isn't great but there may be room for a bit of manoeuvring.

[TheBesty]

I'm on the 97/103 twice a day now and have been for months. Every time they increased my dose I felt groggy for a couple of weeks then it all settled down. My BP is usually 90-110. I have always had odd bouts of dizziness since i left hospital, usually worse when im bending down or getting up too quick so im not sure if its any of the meds or just Heart failure in general?

[Cherrelleford in reply to TheBesty]

My BP is usually around 87/53 but I manage because of the beta blocker being high and that got rid of my dizzy spells but not they are back. I will see what my GP says and hope for the best

[TheBesty in reply to Cherrelleford]

Thats the thing about all the heart meds, they all seem to lower your BP. The worst Entresto switch was the last one when they put me on the strongest dose, I felt crap for about a month but the cardiologist told me that being on the top dose will give my heart the best chance, so I stuck it out... If the dizziness is too bad they will stick with lower dose, its all about quality of life balance at the end of the day, right

[Nanny1971]

I’m on highest dose of entrusto I get very sleepy and dizzy it’s been a month now I’m unable to work anymore because of all the meds I’m on it’s a nightmare but all they tell me is it will get better ❤️‍🩹 stick with it and see how it goes x

[Cherrelleford in reply to Nanny1971]

I'm always sleepy but I have 2 kids. Dizziness I've had before but the wobbliness walking is new. It's still new to my system so fingers crossed it will ease or they will keep me on the lower dose x

[Deejay62]

Hi yes it did the same to me so they had to put me back on the lower dose. Even now on the lower dose my blood pressure can go very low sometimes.

[Cherrelleford in reply to Deejay62]

I'm thinking they might do the same xx

[Deejay62 in reply to Cherrelleford]

They probably will have to. It does work but most people can’t tolerate more than the lower dose which is needed to raise EF. Im waiting to be approved for another new drug.

[Lezzers in reply to Deejay62]

Hi deejay

Can I ask what drug you're waiting approval for?

[Deejay62 in reply to Lezzers]

Vericiguat, have you heard of it?

[Lezzers in reply to Deejay62]

No, not heard of that one. Is it for HF? As you know my husband has severe HF, I was talking to his nurse this week around end of life care (not near that yet 🤞) they're trying to treat him aggressively so, despite his low BP they're increasingly his Entresto to the next dose & possibly on to the highest dose, if his BP doesn't dip too low. But she said unless any new meds come available then there's not much more they can do.

[Deejay62 in reply to Lezzers]

Yes. My Biv pacing has dropped to 80% and I’m getting a lot of non sustain ventricular tachycardias. I might have to go on anti arrhythmia drug too. But that new one will depend on if I’m approved or not in MDT meeting.

They would have loved to increase entresto but it won’t work due to blood pressure. I’m slowly fading. I have pulmonary hypertension too

[Lezzers in reply to Deejay62]

Thank you, this is really interesting, I'll research it but I may come back & ask more questions if that's ok. I'm sorry you're having these problems, my husband was having lots of sustained & non sustained VT's last year and had to have an emergency ablation, he was put on an anti arrythimia drug for a year. Since then he's had no more VT's but he does now also have LBBB so he's had a CRT-d fitted as he also has bradycardia. Please let us know the outcome of the MDT meeting. Good luck 🤞

[Lezzers in reply to Deejay62]

Can I ask if you're in the UK?

[Deejay62 in reply to Lezzers]

Yes I am in England.

[Lezzers in reply to Deejay62]

Do you know if it's been approved by NICE yet? I know it's been approved I'm America & Europe but I can't find anywhere where it says it's been approved by NICE

[Deejay62 in reply to Lezzers]

That’s why they have to go to a meeting. I don’t have any more options. I did the entresto trial because I didn't want heart transplant. I think this one has gone through trial. After the meeting if I’m approved I fill find out more.

[Lezzers in reply to Deejay62]

Thank you, it would be brilliant if you would do that. It definitely isn't licenced by NICE as yet, but if I remember rightly I do believe some people were given Entresto before it was fully licenced or something of a similar nsture. Fingers crossed for you 🤞