Wet AMD or Central Serous Retinopathy? - Macular Society

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Wet AMD or Central Serous Retinopathy?

Christina11_11 profile image
15 Replies

Hi everyone, I'm 52 and have had symptoms of central serous retinopathy in one eye for the past 10 years - on and off. I recently went to a new retinal specialist ophthalmologist who said my OCT scan looked like macular degeneration. He did 2 Avastin injections. The wavy lines I was seeing disappeared, but I think my central vision got more blurry and washed out then it had been before. After the Avastin injections the OCT scan showed no change, so he wants to try Lucentis injections. He is not 100% sure I have macular degeneration- it may just be chronic central serous. I'm not sure I want to have more injections in my eye. He says Avastin doesn't cause central blurriness even though I have seen that listed as a side effect, and that has been my experience. Any thoughts or suggestions? Has anyone had any bad reactions to Avastin or Lucentis; or had Central Serous Retinopathy turn into wet macular degeneration? When I was first diagnosed with CSR my optician and ophthalmologist at the time said CSR doesn't progress into AMD. Not sure what to do....

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Christina11_11
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15 Replies

Hi Christina, I suggest you speak to the Macular Society. There's tel & email contact on their website.

I too thought csr & wetmd separate conditions , although like brvo can cause the same damage problems on the macular. I don't know if treatment is the same ( eg with brvo they can give steroid implant which wetmd sufferers can't benefit from).

I suppose it's possible you have been incredibly unlucky and developed two separate conditions. Or maybe one is an eventual trigger for the other. To have csr for ten years with no treatment sounds odd to me but I don't know anything about it other than stress makes it worse. There's a lot the drs don't seem to know too and we all respond differently so there's often not a clear path.

Lucentis is specifically formulated for the eye ( like eyelea) unlike avastin so although more expensive is generally preferred from the whole body perspective . Also, the loading dose with the ' proper' inj is 3 before they check.

When I was having inj I often got central blurriness for that day but it would go. Other blurriness would come later when oedema was returning or worsening.

Personally, if Lucentis is known to be a treatment for csr, and my sight was worsening noticeably I would give it a go. There are people on here who may have personal experience to share with you which will be more useful I suspect!

Best wishes going forward x

Macular_1 profile image
Macular_1

Hello Christina,

I am so sorry to learn about your eye problems.

Are you in the UK? If so, as eyesright suggests, please call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

It is very difficult to advise you in on this forum or even in an email. You need to get some answers about your exact diagnosis from your hospital consultant.

Central serous retinopathy (CSR), also known as central serous chorioretinopathy (CSC or CSCR), is an eye disease which causes visual impairment, often temporary, usually in one eye.

Wet macular degeneration is ofetne described as a small bleed at the back of the eye and can often to treated with anti-VEGF injections such as Eylea or Lucentis (sometimes Avastin, but that is 'off label' in the UK).

Please see our booklet about treatments at the following link;

macularsociety.org/sites/de...

Best wishes

Macular Society

isherwoodjon profile image
isherwoodjon

Christina

I had Avastin 3 years ago.

x4 injection course.

Wavy lines seen disappeared & been able to continue driving.

Wonderful Avastin I say.

Good luck.

John Isherwood

Nottingham

butterflies34 profile image
butterflies34 in reply to isherwoodjon

How did you get Avastin? I'm told it cannot be used in the UK as the FDA won't license it

Christina11_11 profile image
Christina11_11

Thank you all for your thoughts! This is a great discussion board.

I am in the US, and I just happened to find this page before finding anything similar in my country.

It is Eylea, not Lucentis, that was recommended.

Also, does AMD usually affect both eyes or just 1. It’s only my right eye that’s affected (thank God) This seems to fit more with the CSR diagnosis?

Rosalyn-helpline profile image
Rosalyn-helplinePartner in reply to Christina11_11

Dear Christina11_11,

When an individual develops wet AMD in one eye then there is approximately a 50% chance of them developing it in their second eye within 5 years.

It seems that sometimes ophthalmologist's are unsure as to whether an individual has CSR or wet AMD.

I do have some information on CSR that I could send you which may provide a useful discussion point with your ophthalmologist. Please email us on the Macular Society helpline if you would like to receive this:

help@macularsociety.org

I am copying a link to our Guide to AMD:

macularsociety.org/sites/de...

In addition, I am copying a link to our booklet, Emotional impact:

macularsociety.org/sites/de...

Kind regards,

Macular Society helpline

Hollyg profile image
Hollyg

hi, avastin saved my sight took a while but I also changed my diet rather radically, and began meditating 2hrs a day. So, there's that 😊

Christina11_11 profile image
Christina11_11 in reply to Hollyg

Hi, could you share your diet changes? One thing I really noticed is my eye would get worse when drinking certain types of alcohol. None of my eye doctors had ever heard anything like that and just ignored it. But it makes me think it's related to blood sugar?

Hollyg profile image
Hollyg in reply to Christina11_11

there are no empirical studies indicating a nutritional link..to my knowledge nor my ophthalmologist's knowledge. Although I too have found improvements limiting refined sugars.

I'm basically off white foods and dairy. I vary my proteins to hulled hemp seeds, pea protein and boneless skinless white chicken meat and wild Salmon.

carrots, kale everyday, chard spinach a variety of spices and fruit.

its rather a lengthy concoction but is fun if you're creatively bent.

it's an anti inflammatory diet there are loads of ways to do these diets.

Christina11_11 profile image
Christina11_11 in reply to Hollyg

Thanks for the info!

alalex101 profile image
alalex101

Your case sounds similar to mine. I have had CSR on left eye which resolved a couple of times without treatment when in my forties. In my fifties I have been diagnosed with myopic degeneration on both eyes. Are you myopic (nearsighted'? I have unresolved fluid in the left eye for a few years now with out treatment. I consulted another retina specialist and received 3 lucentis injections without improvement. The newer consultant calls it Cnv not CSR. Considered PDT but it has risks so for now just monitoring it. My right eye is better than left but had one episode of Cnv which responded very well to one avastin injection. Report changes to your specialist immediately and insist on being seen soon when they occur. At 58 I am still working and driving though I do need a little larger font. The dimness and some distortion and wavy lines are still present in the left eye and seem worse at times than others. Your CSR may not improve with injections from my experience. I wish you courage and good physicians to help you to live optimally with your condition.

Christina11_11 profile image
Christina11_11 in reply to alalex101

Could you tell me what CNV and PDT stand for?

Thank you

alalex101 profile image
alalex101 in reply to Christina11_11

Choroidal neovascularization which is characteristic in wet AMD. Photodynamic therapy is a treatment used less now since anti VEGF therapy has been discovered.

Aude profile image
Aude

Christina,

I wish you well in your treatments to preserve your vision. The only thing I can offer as advice is to monitor your eye pressure carefully after having Avastin injections. I had dozens of Avastin injections which led to my pressure going way up over 50, leading to a worsening of my condition. Not everyone has this response to the drug, but caution is warranted, especially if repeated injections are recommended. Lucentis has a smaller molecule, so it may be a more effective treatment ioption and possibly with less pressure raising side effects, but studies comparing the two drugs are inconclusive as far as I can tell. Cost is a factor between the two drugs and the type of insurance that you have will factor into the most practical decision. Good luck and don't be lulled to sleep by just following your doctors advice without doing your own homework.

IBBB profile image
IBBB

Hi Christina

In a similar position to you. Briefly, started with CSR in left eye around 2004. Thought initial episode a one-off - it wasn't! Repeated attacks every other year roughly, up to around 2017/8, after that noted the circular dark shadow had remained in visual field, but only really affecting if I obscured good right eye. Otherwise could manage fine.

Early 2019 suddenly in same eye found everything going wavy and crazy. Couldn't read with my normal reading glasses, lines just going haywire! Back to Moorfields where they diagnosed CNV. After about 5 weeks it seemed to abate without treatment.

Then Jan 2020, same thing again. Back to Moorfields and all same tests. They wanted me to start the injections, then Covid happened. But once more after some weeks, my eye seemed to improve.

2021, about 9 weeks ago - same thing. The consultant said now the new layers are fusing into the retina, and worse. They still can't determine whether secondary to CSR or is WMD.

Just started with first injection of Eylea. Not sure how hopeful I feel given they don't know exact cause. Maybe too early, but first injection at least has elicited no improvement.

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