Congrats on becoming a Nanny , I hope that both the baby and mum are well.
So the tests are piling up and so is the information, yes you are right there is very little happens in-between the test appointment and I'm afraid that is when the worry and anxiety begins to raise its ugly head.
But that anxiety is normal and you will feel that you are not being supported by the medical profession until those results have been collated.
Yes as far as I am concerned it is a miracle drug and has helped move my -20% EF to around the +60 mark.
I am astounded that you almost have to beg for this drug, for here in Southampton it is given freely.
Maybe he { Dr } is holding back until the Cardiologist is happy that this is the drug that will befit you most.
Please try not to over think things and enjoy your life as it stands now, no one knows what the future holds, but we do know that it will mould itself around you as you slowly step into it holding your grandchild.
You are not alone, we are here for you and so are your loving family.
Take care and please keep us informed of your journey.
That's positive to hear. Fingers crossed I can start taking ASAP. At the moment we have agreed to self fund for 3 months until my gp agrees to funding. Do you take anything alongside it?
Hey I have dilated cardiomyopathy too. My EF has gone from 10% to 15%. I take entresto 24/26 which is the lowest dose as body can't handle the higher ones. I've been on it over a year. I also have furosemide, dapaglaflozin, bisoprolol and warfarin. I have had an ICD fitted too. I didn't get entresto till a few months after my diagnosis.Fingers crossed for you x
I have just been in hospital for nearly 3 weeks due to ongoing heart problems and have been put on entresto plus 2 other meds that I have been told are wonder drugs so really push for answers and availability. It shouldn't be a post code lottery with drugs making them only available for some. I have been told the effects don't really manifest for a few weeks so I am keeping fingers crossed that I see a difference. Good luck....don't stop pushing for something you are entitled to. Xx
I have dilated cardiomyopathy diagnosed about 7 years Ono. I have a ICD as I was passing out. Iv been on Entresto to 49:51 twice a day for about 18 months now also put on Dapagliflozin at the same time I was offered it by the cardiologist. The reason I was put on it I was getting out of breath on exertion. Don’t no if it has improved my EF. I also take Amiodarone / Asprin/Atorvastatin/Bisoprolol and Eplerenone. And congratulations on your news
I only started Entresto a week ago so too early to say, taking 24/26mg. I have been referred to the heart failure nurses and yesterday had my first helpful and chatty call where all my questions were answered. I hope you can get this support too.
Hi there, from NZ. I had a HA back in Feb 2022. My EF immediately post HA was 30%, and that level just triggered the health system to permit Entresto as a subsidised drug. The reason being they judge it capable of preventing/reversing/slowing severe heart failure and keeping people out of hospital, and based on clinical trials it seems to be a superior treatment for some people. My measured EF at six months was 45% (and hopefully still improving). Here's all the detail you will ever want about HF and its treatment .... you need to scroll down to read about "ARNI"s of which Entresto is one. jacc.org/doi/full/10.1016/j...
I thought Entresto could only be issued by either a Cardiologist or a Heart Failure Specialist Nurse?
After the First Prescription It is then issued routinely by your GP. I take mid dose and found no problems with it only my EF has dropped slightly from 44 to 38% but I was told without it my EF could possibly have gone much lower!!
As far as I know it's the cardiologist who prescribes Entresto based on the findings of all the heart tests. I've got Afib and DCM, been on the middle dose, don't know if my EF has improved as my next echo isn't due until next year so fingers crossed.
To be honest I don't understand why you're having to self fund when it's a readily available drug on the NHS. If it's prescribed by the Cardiologist/Heart Failure Clinic, your NHS GP would just have to get on with it. My experience of being on it for 15months is that's it's very positive. I was initially on Rampiril as they were unsure my kidneys would cope with Entresto as it works them harder. My eGFR is in the mid 30's, but, I'm under no illusion I could be taken off it, if blood tests show it dipping further. Likewise with Pottasium levels, if high, I was told that would also terminate use.
Hi I was diagnosed with dilated cardiomyopathy with at least moderately impaired LV systolic function at the beginning of this year. I was breathless and had to stop after every 50-100 steps let alone the stairs. My EF was between 30-35. I started taking Entresto in February. I started with the lowest dose and I am still taking this dose and not more as I have issues with my blood pressure which is a bit low. So, the dose cannot be increased. The good news is that Entresto is effective, at least in my case, even in a low dose as the MRI done just after 2 months, at the end of March showed that my EF went up to 69 which is in the normal range. Now I don’t feel breathless, can walk several kilometres at a normal pace and do yoga exercises as well. I can say that this is a wonder medication and I am very happy that I can take it even in a low dose.
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