How eplerenone works to treat csr? - Macular Society

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How eplerenone works to treat csr?

Dipper2
Dipper2
28 Replies

So here’s a question about Eplerenone which I’ve just started at 25mg after 7 weeks with csr in left eye developing rather than resolving. As I understand it it works by blocking the action of aldosterone which has been implicated in some way in development of leaks behind retina. It doesn’t do anything to lower cortisol. I don’t have high blood pressure or any symptoms of too much aldosterone in system so wondering how it’s going to help... Maybe (quite likely!) I just don’t fully understand it!

28 Replies
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ironbrain

I think you've got most of what's known about its action.

It looks as if how effective it's likely to depend on how advanced the condition is:

"On the other hand, patients presenting widespread retinal pigment epithelium changes are less likely to benefit from eplerenone treatment, which may argue for an earlier intervention."

journalretinavitreous.biome...

Once again it's clear, regular, exhaustive eye examinations, and fast action are needed to be surer of keeping our sight.

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180164
180164
in reply to ironbrain

I've had chronic csr for 11 years. I'm funded with pdt visuldyne therapy do u think I will be offered this medication . Regards mandy

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Dipper2
Dipper2
in reply to 180164

I’m sorry to hear that. Really sorry but I don’t know answer. Maybe chat to your consultant about it?

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Dipper2
Dipper2
in reply to Dipper2

It seems there are a lot of differing views out there. My consultant said it is currently viewed as first line treatment for csr & he wanted to start it as soon as saw not improving after 7 weeks. It may not be prescribed on nhs as UK VICI trials still in progress. Good luck

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ironbrain
ironbrain
in reply to Dipper2

I think I understood that eplerenone would have been available had I had CSR at MREH. That doesn't mean it won't still be off-label for the condition, I guess.

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Dipper2
Dipper2
in reply to ironbrain

Sorry for ignorance what I’d MREH? Eplerenone is still off label for csr

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Dipper2
Dipper2
in reply to Dipper2

Is not i’d!

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ironbrain
ironbrain
in reply to Dipper2

MREH? Manchester Royal Eye Hospital, Manchester, UK.

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Dipper2
Dipper2
in reply to ironbrain

Ah thanks. Is that nhs? I’m in Huddersfield but hadn’t heard of it!

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Dipper2
Dipper2
in reply to Dipper2

Guess it’s a teaching hospital - they do tend to be more adventurous with trying out medications etc

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ironbrain
ironbrain
in reply to Dipper2

Yes, it's NHS (for what I have anyway). Huddersfield, that's not so far away, I've cycled there and back. Not so sure it will be in their catchment area though, which they tend to check vigorously. Probably all the hospitals on the site are teaching hospitals, as is Salford Royal (no eye department that I know of) out towards Eccles, where I used to live.

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Dipper2
Dipper2
in reply to ironbrain

No not that far away! I have Bupa insurance through my husband’s work and the excess for the year had been paid so after initial nhs diagnosis I decided to see a private consultant just because I had a lot of questions and the nhs staff don’t really have time to spend with individual patients in that way sadly. The Eplerenone was prescribed by the private consultant not nhs. Tricky bit is that Bupa probably won’t continue to fund future appointments and I certainly couldn’t afford his fees otherwise so then I’ll be in a bit of a no man’s land. Health care & treatment options vary so much depending on who you see and where you live.

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180164
180164
in reply to Dipper2

I'm at eye hospital il ask I can't see me been prescribed it as I've had the condition so long

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Dipper2
Dipper2
in reply to ironbrain

Absolutely! I’m just trying to figure out why no-one checks aldosterone levels before prescribing Eplerenone since if you don’t have raised blood serum corticosteroid levels then not sure how Eplerenone would help!

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Robertca

Hi Dipper I am on the same issue here I was prescribed eplerenone for 1 month next step after that if there is no progress will be photo Dynamics I've have injections before but they'd never work that good on me I changed doctors this one has a different View he wants to try this first then move on but I'm like you I'm not sure if this is the right move but I'm willing to give it a try same as you my only issue is my left eye I've had lost about 30% on my side on my left side all I can tell you it's keep going with the treatment and good luck

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Dipper2
Dipper2
in reply to Robertca

Hello! Good to hear from someone else on same treatment. Let’s keep in touch?! I’m only on 4th day so not really had time to see if it works or how I’ll get on with it. Have had csr for nearly 8 weeks, seemed to be resolving on own to start with then suddenly got worse about 2 weeks ago. 🙁. Best bet seems to be to stay positive & assume Eplerenone will help, though know that’s hard! In some ways feel lucky that consultant is trying this rather than doing nothing. Hate taking drugs but equally hate the whole csr thing! Sending healing x

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Dipper2
Dipper2
in reply to Dipper2

In fact it got worse again the day after I started the Eplerenone but think that’s maybe because I got stressed about taking it. Can’t imagine 1 x 25mg tablet would do much damage!

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Jogie

Hi all

I've had CSR in both eyes now for over 4 years. I was under Pinderfields in Wakefield and no treatment was offered at any time. I've now moved to York and have today been offered Eplenernone (subject to my bloods being OK) and the consultant is going to apply for funding for PDT. I know these may not work but I'm just so pleased that someone is willing to try something. I have scarring in both eyes due to the fluid being there for several years, but I'm hoping it will help with the current leaks and prevent further scarring.

I agree with others on here that my new leaks correlate with stressful incidents/times. I'm trying to minimise stressful incidents as much as I can but it's sometimes easier said than done.

I'd be interested to hear your updates on Eplenernone and will look for the Facebook group which has been mentioned.

Good luck all xxx

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Dipper2
Dipper2
in reply to Jogie

Hi there. I’ve been on Eplerenone for 8 days now so early days but no bad effects so far. Having bloods monitored regularly. I feel lucky that my consultant near Halifax decided to try this drug as soon as the csr showed signs of developing rather than resolving. I’d rather be trying something than just waiting to see, and it is less invasive than laser/PDT although I am going to ask about PDT as a next step if needed. Sending you healing thoughts and good luck with the treatment - it certainly seems to have had some promising results albeit on small sample sizes. Will be interesting to see results of UK VICI trial later in year. Keep in touch with how you’re doing x

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Dipper2
Dipper2
in reply to Dipper2

Ps I’m on 25mg daily at moment but that will be increased to 50mg daily if I tolerate it ok

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Dipper2

Another thought is although many of us think this is related to stress and this is thought to be a contributing factor it seems a complicated and poorly understood disease. Stress can’t be only factor or half the world would have csr and women would be equally affected as men! Sometimes with women I wonder if our changing hormones contribute since it also occurs in pregnancy. I’m an anxious person more than a stress head but I’ve been this way for years and have been through more stressful situations than I was when this started so why only now?

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Jogie

It's a complicated one isn't it. I know there must be a cause, but it's probably some combination of many factors and, as such, difficult (impossible?) to isolate. Hope the Epleronone brings you good results 🤞

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Oggy123

Yes I’m wondering also! I’m on 50mg since October, my consultant says I need to stay on it.

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Dipper2
Dipper2
in reply to Oggy123

Hmm has it helped? Retinal specialist at Manchester eye hosp recommending PDT/laser at 6 month mark if no improvement on Eplerenone (which he didn’t prescribe). I’ve been on 25mg for just over a month, will probably be upped to 50mg soon.

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Jogie

Hi Dipper2

Did the Epleronone work for you? It didn't work for me so I had my first PDT yesterday.

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Dipper2

Hi Jogie

Sorry to hear Eplerenone didn’t do the trick & hope PDT went well - will keep everything crossed for you. I’m still on the 25mg, it’s hard to know if it’s really doing anything, there is still quite a bit of fluid there even if marginally less on last OCT than previously. I’ve got PDT booked at Manchester Eye Hosp next month if it hasn’t resolved by then. I’m very lucky as fluid not central at mo though still distorts vision somewhat. Hope you heal quickly & PDT works!

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Bigtish

My eye consultant didn’t rate eplerenone. He said to try PDT if another leak next year as current leak resolving. I am trying alternative treatments myself. Reducing caffeine to zero, reducing alcohol to minimal, meditating 20 mins a day to reduce stress. Taking Omega 3 and having a clean, mostly plant-based diet with eggs and fish. This condition is caused by stress in my case. Meditating using the Headspace app has changed my life as reset my brain so I am no longer stressed.

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Dipper2
Dipper2
in reply to Bigtish

My consultant doesn’t rate it either and says latest evidence is that it’s no more effective than placebo (but then even placebos work and it may still work for some). Think condition so poorly understood frustratingly there is no one size fits all solution! Doing what you’re doing and reducing stress seem to be the main ways we can help ourselves. I had Fluorescein angiography and ICG yesterday. Confirmed diagnosis of csr and pinpointed source of leak but as it’s not central (thankfully) consultant has recommended watch and wait a little longer with PDT in 3 months if no improvement (there is a low risk of damage with PDT and a risk of damage if leave fluid in eye, though risk is still low until it gets past 9-12 month mark so he’s trying to find a balance!). Good luck with it all!

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