SPIRONOLACTONE

[Familyk]

Morning,I'm due to start on spironolactone on Monday. Is there anything I should look out for. I'm currently taking bisoprolol and losartan, having been taken off entresto due to low blood pressure. Having mri on Monday, first since starting medication. Fingers crossed for a good result. EF currently 32. HF nurse has mentioned fitting icd if it hasn't improved. Thank you everyone x

[Cherrelleford]

Hey I used to have this but had it stopped. Everyone is different but dizziness and low energy. Sickness and nausea are the main side effects. I struggle with dizziness and this tablet didn't help which is a shame as it's meant to be really good. Hope it goes well for you xx

[Familyk in reply to Cherrelleford]

Oh gosh, I hope not. I've struggled on entresto so came off and ramipril. X

[Harveyone]

Hi,I also was taken off Entresto. Spironolactone was too severe with me so ime on Eplerenone no problems.Yes ide go for the ICD which should improve you.I have a CRTD device,doing quite well now.Goodluck take care.

[Familyk in reply to Harveyone]

Thank you. I will give it a go but if I feel dreadful will let my HF nurse know. I'm surprised she has prescribed spironolactone and not Eplererone. Knowing my history, passed out on entresto and BP is only 90/50 and lower. What is the difference between icd and crdt?

[Harveyone in reply to Familyk]

Icd is like a pacemaker with defibrillator.Crtd is a resynch device with defibrillator GOODLUCK

[Etzel]

I was swapped from Spiro to Eplererone after 3 months due to Gynecomastia, basically my man boobs got tender/sore! Just today they were discussing the possibility of moving from Candsarten/Amlodipine to Entresto, more side effects to look forward to......

[Familyk in reply to Etzel]

As if it's not hard enough having HF you get all this on top . Hope you will be ok x

[Motorman in reply to Etzel]

My man boobs got to a respectable size, and my libido disappeared, I came of them and will never take them again.

[bunty55]

on spiro fir 12 months bad headache sickness and my hair has started to go really thin coming of them no go for me on entresto not to bad

[Familyk in reply to bunty55]

Thank you x

[Anon2023]

hi. How are you doing? I take 25mg of spiro each day and the only side effect has been peeing more, but still less than I did on furosemide. From what I read the bad side effects seem to occur more with men. I’m hoping the mri on Monday goes well and you get some positive news. It’s a shame bout entresto but there are always new meds in the pipeline and hopefully one of them will suit you better. Xx

[Familyk in reply to Anon2023]

Hi,I'm doing ok. Was very disappointed about the entresto but I was passing out so been moved to 75mg of losartan. There seems to be mixed reviews regarding spironolactone, I will take it and see what happens.

Fingers crossed for better news on mri Monday. I will let you know what they say.

Take care

L x

[Hidden]

Dear You,

It has worse effects on us men, the main one being Gynecomastia with sensitive nipples, I have been lucky and it has not affected me that way..

It has an effect on testosterone { including women } but is used for acne as well, so my early weepy stage on it soon passed { tears for The little Match Girl }

I hope that you don't have any side effects

Take care

[Familyk in reply to Hidden]

Thank you. I'm on mirtazapine for sleep which might also help with the tears.Take care

[Yumz199725]

Hi FamilykI was on spirolactone for about 6 months but then I got taken of it cause I no longer needed water tablets, hope you get on with it ok and hope it helps improve your EF ❤️

[Familyk in reply to Yumz199725]

Thank you. Been a bumpy ride finding right combination. Finally will be on 3 pillars. For some reason they aren't putting me on the 4th. I will ask why next time I see consultant which shouldn't be too long after my mri on Monday.

Take care

L x

[Yumz199725 in reply to Familyk]

Hope your MRI goes well x

[Familyk in reply to Yumz199725]

Thank you xx

[10gingercats]

Spironolactone did for me what it was supposed to do,It depends on what it is prescribed for and individual metabolism as to how it may affect you...plus how much is prescribed. I was only ever on a very small dose together with a small dose of furosemide.Bot together kept fluid away from my lungs and from around my heart.No side effects.

[Familyk in reply to 10gingercats]

Thank you. My nurse hasn't really explained she I'm starting on it, just told it was 1 of the 4 pillars recommended for DCM. I'm not aware I'm holding any fluid, although I have put 5kg on in 2 months since starting losartan. Another question I will ask next time I see her in a few weeks time. I'm only going to take 12.5mg.X

[10gingercats in reply to Familyk]

that was my dose with 20mg of furosimide

[Familyk in reply to 10gingercats]

As long as it does what it is intended for, i will take it as recommended

[Hidden]

hello again. Are you also on Dapa? The entresto is a tough med to get used to. In the early days for me it seemed to work great but i think the improvement was also down to the cardioversion. I hope you get some good news on Monday. good luck x

[Familyk in reply to Hidden]

Hi,No, I'm on losartan and bisoprolol. Spironolactone will be the 3rd pillar. I also take mirtazapine for anxiety and sleep.

Really hopeful that results are positive, it's only been 5.5 months since diagnosis.

What and when do you have cardio version?

X

[Hidden in reply to Familyk]

I had the cardioversion back in the first 6 months since i went downhill. Seemed to correct it. Did you get any positive news?

[Familyk]

Hi, I'm now waiting for the results, just hoping they are good. Still waiting to start spironolactone as well, gp not done prescription yet, so frustrating x

[Anon2023]

hi. I’ve been thinking about you and hoping that you are ok. It’s a shame that your gp is dragging their heels about your prescription as I’m sure that you will just want to get on with it. Fingers crossed that it goes well for you. Xx H

[Familyk in reply to Anon2023]

Thank you very much. Nothing is ever straightforward unfortunately. Hope you are ok xxx

[Anon2023 in reply to Familyk]

hi I’m doing ok thanks, still plodding on 😊 I’m sure that things will work out for you but it probably feels like another hurdle for you at the moment. You’ll get there eventually. Xx

[Familyk in reply to Anon2023]

Fingers crossed xxx

[am1875]

Hi. I had trouble with side effects of Spironolactone so was switched to Eplerenone and that’s going well.

[Hidden]

I think spironolactone is good at what it does but I had a blood test and the potassium is 5.9. So with the aid of my doctor iam going to take half of a 25mg tablet a day and have another blood test next week. I don't really know if I get side effects or not. I do get dizzy as my blood pressure has come down quite alot from where it was. But I hope that by reducing the spironolactone I might not get the leg aches so much. But my congenital heart disease does not help as I don't know what causes what. Its a horrible journey to find what suits us. However ensure that you don't increase potassium with potassium rich foods. Such as banana's. Iam only on spironolactone and lisinopril. So lucky I don't have too many tablets to take.

[Lezzers in reply to Hidden]

My husband has a history of high potassium which got worse with spirolactone, his readings have been as high as yours before now. Because it's such a good med for your heart his nurse told him to restart it but on 1/2 a tablet every other day. After some months this was increased to 1 tablet every other day, thankfully that hasn't affected his potassium level at all. Good luck I hope the change in how you're taking it works for you

[Hidden in reply to Lezzers]

Thanks for that I hope it does start to come down. I think it has worked reducing the water retention but it is hard to know what is normal or not. I kept a small chart with all my figures and back in 2017 before I knew anything about heart issues my potassium was 5.5, but since being on spironolactone it has crept up. So hopefully I can start to see it come down. But high potassium can cause its own side effects. Thanks for the reply.

[Lezzers in reply to Hidden]

Your story sounds very similar to my husbands. I also started keeping a spreadsheet as back in 2008 the GP phoned to say that my husbands potassium levels had been creeping up, that it has been missed & that he had an urgent referral to hospital. Fingers crossed your level does come down & quickly 🤞 please let us know. And just as an aside though you may already know, but when you're having your blood taken you're often asked to clench your fist, don't do this this as clenching your fist does something to your potassium and gives a false high reading. Just something I've learnt over the years.

[Hidden in reply to Lezzers]

That's interesting to know. I did read somewhere where you can get high readings if the blood cell are damaged when it is taken. Might be something where you clench the fist which cause blood pressure to increase and but I will keep that in mind. Once your husbands figures came down did he start to feel a bit better in himself? Thanks for taking to me.

[Lezzers in reply to Hidden]

Yes, I think your right about blood cells being damaged, it's also well known that the way the blood is transported to the lab can affect the levels as can the blood being left too long before being tested, which is why a further test is done usually a week later. I did ask the cardiologist if it was possible that these things could be the reason why my husbands levels were always high and was told no because his readings are consistently high. Tbh, the high potassium didn't affect him at all, without the blood tests he wouldn't have even been aware of it. But he was taken off his candesartan for a month (he wasn't actually on spirolactone when his level was 5.9) told to drink plenty of fluids to flush the potassium out of his system and it took about a month for his level to return to within range. However, I'm not suggesting you do this.

[Hidden in reply to Lezzers]

Interesting. I have been told I need to drink 1.5 litres a day. That was before this little increase in potassium. It is a pain these things come to test us. Nothing seems straight forward. I am on lisinopril which also increase potassium. But I suppose its a balancing act to get it all under control. Its hard all this. Thanks for the reply.