Eye stable but not responding to treatment... - Macular Society

Macular Society

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Eye stable but not responding to treatment????

Lupin1587 profile image
5 Replies

My story briefly - BRVO in 2016. 10 injections of lucentis plus 6 laser treatments at BMEC.Transferred to local hospital where I received 6 more lucentis then swopped to Eyelea now had 5 of these. Went to clinic today to be told my vision is stable but my eye is not responding to treatment?? Now have to have 2 more Eyelea then see consultant.

Felt quite distressed at this news.

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Lupin1587
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5 Replies
tallyho profile image
tallyho

Hi there sorry to read this.

So I would see good news in this as in your eyes are stable. They have not worse with treatment ( which is the news I have just received)

You have had your loading injections and are now if you are in the UK on a treat and extend pathway.

Having had just 5 injections of Eylea it’s quite early to say it’s not worked. I know clinicians want to see an improvement after 4 injections but some of us don’t respond that quickly. I had 84 injections of Eylea before moving onto a new drug. All be it I don’t have your condition. Let’s see what happens when you have had a couple more injections that might give a clearer picture.

I honestly wish you well.

Lupin1587 profile image
Lupin1587 in reply totallyho

Thank you for your kind message.It was a shock yesterday as in September they were much more optimistic.

I do find sometimes the consultation can either be slightly positive or very negative. I have an eye test next week at Specsavers. I will see what they say too as I do find they give me more information than the hospital does.

I am sorry to hear treatment has made things worse for you. I do hope things improve for you.

kateanne profile image
kateanne

Hi. I got a BRVO in 2015. The following 4 years I had regular Lucentis injections followed by Eyelea. Eventually they stopped working and the fluid kept returning. In 2020, just before Covid, i was given an Ozurdex implant. Some people need to have these at regular intervals but since having just the one, i've not had to have any more treatment so far. Obviously, I still have limited vision from the brvo which will never go away, but at least the oedema has stayed away. Cataracts are now my main problem. The downside to these steroid implants is they can worsen a developing cataract. You could make enquiries. All the best.

Lupin1587 profile image
Lupin1587

Hi thanks for your reply. I have been told I cannot have an implant due to raised pressure in my eye. I am on 9 eye drops a day 6 for dry eyes and 3 for pressure. So far the pressure is ok.Sorry to hear about your cataracts I have one developing in my good eye as well.

All the best

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear Lupin 1587,

Just to make you aware, the impact of the diagnosis of any eye condition, and indeed any stage in the process, is generally compared to experiencing a bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service:

macularsociety.org/support/...

In case useful, referral is either via us on the Macular Society helpline, or via the form on the website. Link above.

Kind regards,

Macular Society helpline

Tel: 0300 3030 111

Email: help@macularsociety.org

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