Now taking spironolactone

Well hear we go. Now going to take spironolactone on top of lisinopril. This journey is not fun. Having been diagnosed with epstein anomaly. Which I have had from birth. But it is now becoming one of the worst periods of my life. This is becoming a constant worry and I just worry about the effects of the tablets if I get any. I presume it is the way forward to manage this issue. But you have to try it and see what happens. I now know how it feels for people who have to wait for answers. Not good.

[Shar28]

Hay, spironolactone is brilliant in my husband’s experience! It brought his BP under control beautifully together with Lisinopril and Bisoprolol, when just the latter two couldn’t do the job. So yes, another tablet but so worth while. Hope it works well for you too.

[Hidden in reply to Shar28]

Thank you for the reply. I hope I have the same experience of the tablets as your husband. I will give them a go over the weekend. It is just the initial few weeks with tablets that you have get use to.

[Hidden]

Dear Felly12

A warm welcome to your first post here, I hope that you find the answers you need.

I think that it is important that you explain to us what Epstein Anomaly is and how bad your particular strain of it is, how it was diagnosed and of course your treatment and prognosis for it.

My uncle has it and like you was born with it, his is on the mild side and other than a handful of tablets he lives an over full life, diving etc.

I have never known him complain of any ill feelings although after hearing about my own problems he confessed to feeling tired. {he is 59}

Take care I for one am looking forward to your story as it unfolds on here.

[Hidden in reply to Hidden]

Thank you for your reply. Yes it came as a shock really. Went for ecg and had a weird trace. Then went to a and e and they done loads of tests. Ct scan xray and the echo and it was found on echo. The issue gives me low oxygen using a finger clamp. Admittedly it has explained a few things from the past. Like I could not do cross country running. But I still function reasonably well. Possibly breathless when exertion which was proved on stress test. However mentally it is hard coming to terms with it. According to echo the tricuspid valve is in wrong place and one flap is stuck. The others are in good order but this will be better seen I suppose with mri. Just a bit of a body shock really.

[Hidden in reply to Hidden]

Very interesting thank you for telling us a bit more of your story.

so further down the post you say that the Spironolactone is for water retention which is interesting as I am on it because, due to damage, my heart is out of shape and it is supposed to be good for that.

For water retention I am on the dreaded furosemide 80mg.

I really hope it helps you, I personally have had no problems with any side effects from Spironolactone including the feminisation side, but then I am only on 1.25mg.

Take care

[Hidden in reply to Hidden]

Yes they put me on 25mg. Basically. Now iam guessing with the info I have. Due to the faulty tricuspid valve from birth. I suppose as I have got older. My blood pressure has gone up. And of cause my weight and other things get older. The blood pressure goes up due to arteries stiffening up with age. The stress of life. And of cause due to the body trying to compensate it holds on to salt and water. In turn this effect the blood. And so also effects blood pressure. Bit of a double wamy. So by removing the water it should help the heart and lungs work a bit more efficiently, hopefully together. I have just got to try it. If I get a 10% improvement it will help.

[Lizy76]

Hello! Well I was on spironolactone and my body didn't like it. I felt very nauseous and itchy. However I told my cardiac nurse straight away and they took me off it. There is an alternative Eplerenone, which I now take instead and no side effects at all.I hope this helps and that you will be fine on it 🙂

[Hidden in reply to Lizy76]

Thanks for reply I will keep it in my mind what you said. Have not taken one yet a bit nervous. But will try over weekend.

[Lizy76 in reply to Hidden]

Good luck Felly12 and I'm sure you'll be fine taking it. Will keep my fingers crossed for you! 🤞🙂

[Hidden in reply to Lizy76]

Thanks. Read a few things and idea of hair growth sounds good. So to have of a full head of hair again will be rather nice. Bigger boobs though ? I will have to have think on that one

[MelB51 in reply to Lizy76]

I was the same! Itching and rashes all over after a few weeks on it. I took myself off it and the itching stopped. It is a potassium-sparing diuretic and my potassium was already on the high side so I didn’t understand why this had been added to my cocktail of drugs. I wasn’t given anything as an alternative.

[Hidden in reply to MelB51]

I will keep this all in mind. Trouble with tablets they are suppose to help but then cause other issues. It is a real pain as the side effects appear and you carnt seem to talk to any one. Once you are on these tablets you are on your own. To try and battle through it awful really.

[Hidden]

Hiya I’m on spironolacpone, no side effects other than my hair seems to be better , I have very very thin baby hair it’s the bane of my life it’s too thin to get extensions on it so I’m stuck with it , spironolacpone however has made it a lot more manageable, yano those wee whispy bits at the side of your face ? I actually have hair there now and not wee whispy bits ,, hope they never take me off it incase the hair all falls out at once 😂😂

[Hidden in reply to Hidden]

I hope it Improves my hear so I can have the mullet again

[Hidden in reply to Hidden]

Mullets are back in fashion as well , happy days 😂

[Hidden]

Spironolactone update. Well here we go going to take first one in morning. Talked to my cardiac nurse for advice and it has put me little at ease. Due to my epsteins anomoly. I have low oxygen up take. Which does explain alot over my life. However to help improve the situation and to help the heart and lungs by removing water. Due to the right side of heart not being very efficient . This will hopefully aid it to become a little more efficient. Fortunately I done a good stress test on bike to enable the figure's to come up with this conclusion. And the old ticker done good got to 92% of maximum for my age. The possible side effect might be sore boobs. But got them at puberty tee hee. Fortunately the old ticker also has no signs of electrical issues. So I suppose from all this I hope to keep it chugging along.