HeartyJames update :) Optimism

[HeartyJames]

Last two days the side effects of Entresto seemed to suddenly vanish . I went for a hospital consultant endocrine appt. They are going to give me a libre Glucose monitor for 2 months as I get low sugar events, to find out what is going on. So will go nicely with my pacemaker At hospital they measured my BP as 126/70. I cannot recall when I was ever that high as I am usually very low. So with that I had no dizziness and walking through car park , feeling as if I was normal ME again. wow! I was thinking. 'super' - the drug is working and a new life ahead Well one does hope. Maybe I need to be permanantly anxious to keep my BP higher

By the afternoon at home, I was back to my symptoms and breathless, dizzy , buckling legs as time went on and even some angina. This morning breathless on bed , but that is now ok, nausea too (yuk) with horrible headache, (cocodamol got rid of that) and the rest. Well it was nice while it lasted.

I am not too bothered by that. I feel optimistic and I do think this will work out well.

For the first time in two years since attack, I have no appts (except blood tests)...

Now I discover a tooth abscess growing on a back tooth. Grrr

Update: It went away and was a sort of blood blister I reckon.

[Harveyone]

Glad to hear your improving James a day at a time.Keep up the good work.👍

[HeartyJames]

Also : Letter from HF team to get me onto max dose of entresto in two weeks time as bloods were ok... So doubling up..

[am1875 in reply to HeartyJames]

Hi HeartyJames. May I ask how long you’ve been on Entresto and did you have shortness of breath before Entresto. I just started middle dose of Entresto and last few days a little sob. Have you heard if Entresto causes sob even if it increases ef? Wish you well.

[HeartyJames in reply to am1875]

What is sob?

[Milkfairy Heart Star in reply to HeartyJames]

Short of breath

[am1875 in reply to HeartyJames]

shortness of breath. Abbreviated over here

[HeartyJames in reply to am1875]

Been on it since January, but started on lowest dose. Changed to mid dose about a month ago. Actually since post I have reassessed and do not think I have improved, feels worse than when I started. Breathlessness is common and never smoked, don't drink and had a very active healthy life at least I thought!! BP registered as 65/50 today and very dizzy. Fainted yesterday....

[am1875 in reply to HeartyJames]

Have you considered going back to the lower dose to see if that eliminates the shortness of breath? Did you feel better on the initial dose? I’ve read where some can’t go to the higher dose and have gotten on well. I am on the middle dose and have halved it on my own to see what I felt like. I take the full middle dose at night. It made me feel better the only time I tried it. Your bp is too low and your meds need to be adjusted imo. All the best.

[HeartyJames in reply to am1875]

My BP always been low even before attack. I also had heart rates in the twenties bpm until I had pacemaker. Now set at 50. Lower dose, middle dose , not much difference to me

[am1875 in reply to HeartyJames]

Do you think it might take longer in cases for it to begin working? Seems I may read that somewhere, or something similar. However, there are other treatments that are successful for most. All the best.

[Hidden]

Hello

You are getting there now which is a positive and nice to read you are feeling optimistic to x

[Hidden]

Dear James

Glad to hear that things are settling down a bit.

I am on the full dose of Entresto but it appears to be affecting my kidney functions, so have to monitor it for a bit longer.

But then they upped the Bioprolol at the same time so it could be that.

What I'm basically saying is make sure they keep an eye on your kidney functions .

Take care

[HeartyJames in reply to Hidden]

YES at the moment 2 weeks after upping dose each time then 3 months forever for liver and kidney function. I have repeat appts

[Anon2023]

hi. So pleased that the side effects have settled down. Fingers crossed for your next increase in entresto. I found it ok with no side effects. I’m keeping my fingers crossed for you. X

[HeartyJames in reply to Anon2023]

Other than being a bit breathless , ( but that maybe just out of condition) the side effects gone away..