Increased symptoms as meds increased?

[whisperit]

I was diagnosed with LV failure earlier this year (EF 35%). Over the last 6 months or so, I've been weaned onto the standard meds - 5mg bisoprolol (bd), 94mg Entresto (bd), dapaglyflozin and eplerinone. A week ago, I started on furosemide 20mg.

However, although my BP and heart rate have come back into a normal range, my strength and effort tolerance has steadily declined. I'm now struggling even to stand from a sitting position.

Obviously, this is something I need to raise with my cardiology team. But I wonder if anyone here has any experience of something similar that would be helpful in the meantime? Thanks

[Hidden]

It was interesting reading what you put about medication. I have completely different problem which is congenital, however iam now starting dapagliflozin 10mg, entresto low dose.. and was put originally on furosemide 40mg but I decided to cut in half and try 20mg furosemide, as it seemed to make my blood pressure go low and from a seated to standing, very uncomfortable. Fortunately iam seeing a heart failure nurse so will discuss many issues with them. After talking to them they agreed to go for 20mg furosemide. However my concern is that they will try to put my entresto up to the middle dose and I do think my blood pressure is low.? Admittedly when I was first diagnosed my blood pressure was 170/110 however it now sits at rest 117/80 or lower. But wether it becomes a balancing act to get it right I will have to see. The trouble is that, having a rare congenital issue, it's not the left side that's not quite right it's the right side so I have a weakness in this area and unfortunately there are no medications for the right side, there is a possibility that entresto can help the right side but we will have to see. The trouble is they, the medical people don't have to live with your body so you have to explain as much as possible how you feel. But it is frustrating. Take care.

[whisperit in reply to Hidden]

Thanks. Yes, one of the really frustrating things is to communicate feelings and sensations that dont register on tests or blood results but which have a huge effect on how you feel day-to-day. For instance, I find it really difficult to convey the sense of profound fatigue and "heaviness" I have. Many clinicians seem to struggle to acknowledge these, far less assess their clinical significance.

[Hidden in reply to whisperit]

You are right. I do struggle now possibly more than I did? But to explain it , is hard really hard. For me my condition cause cyanosis, so when they try to take my oxygen readings they carnt get a very good reading, they put the clip on my finger nope no reading. Especially when it is cold. So they have to put a clip on my ear then we have to wait and hay presto the reading starts to come up and stabilise, got the dizzy heights of 88%. Trouble is my body has compensated for all of its nearly 60 years and now it is possibly starting to struggle. But because it is so rare 1 in 200000 births I don't think they know what to do. But how do I explain this. Alot can be down to anxiety. But it's a catch 22 your body and heart are truggling your mind thinks right we a problem Houston. We will put the body on high alert and all manner of chemicals go streaming into the body and then you get. The flight and fright responses, causing all sorts of weird feelings. My personal opinion is I don't think I can function on low blood pressure now. I agree that initially it was high, and in words of my cardiologist I was a ticking time bomb, but it is this balancing act of getting the medication to an optimum dosage. Trouble is it's the horrible side effects that can cause many of the issues of fatigue and heaviness as you say. Which I can suffer with as well but what choice do we have.

[BigBen_ten]

Hi Whisperit,

May 2023 with symptoms of wheezy chest and water retention in the lungs I was prescribed Furosemide 20mg and Carvedilol 12.5 mg.Not sure if was the drug itself ,side effects or low tolerance but didnt fair at all well.Sweats,bad hallucinations,confusion and paranoia to the point of not being able to leave the house.Long story short was admiitted to hospital June2023 and diagnosed with a leaking bicuspid aortic valve and related issues.EF at that time was 20%.Furosemide was replaced with bumetanide and added spironolactone,apixaban,dapagliflozin and enalipril 2.5mg.Enalipril now replaced with Entresto(sacubutril/valsartan) 49mg/51mg.Last echo scan showed EF up at around 35% and I feel much more like my old self with hardly any...if any ...side effects.Still a way to go....but definately was a turning point being taken of the furosemide...a very aggressive drug.

Hope this helps a little....good look with your recovery,

Steve.(62yrs)

PS..Initially I suffered with profound fatigue and " heaviness" as you described....couldnt get past 6pm without needing my bed.......thankfully these symptoms have reduced a lot...altho fatigue can still be an issue at times.Can now excercise daily altho have to be cautious.....too much and I easily become short of breath.

[whisperit in reply to BigBen_ten]

thank you,

souonds like youve had a hard road, but its vbery helpful to hear your experience. Having an idea of the variety of options is especially useful.

[BigBen_ten in reply to whisperit]

YW...Good luck.

[MartinOG]

I’ve been on Bisoprolol for 4 years. Originally one 5mg dose but after extreme fatigue it was split to 2.5mg twice a day which still leaves to fatigue and rest early afternoon but not as extreme as it was and not as excessive as your symptoms