Macular degeneration

[Essex-jill]

I was told today that I have very early signs of macular degeneration in both eyes. I was diagnosed with WG over 15 years ago and receive 6 monthly infusions of Rituximab. Has anyone else been diagnosed with this please. All replies gratefully received.

[Suzym2u Moderator Vasculitis UK]

Hi Essex Jill , John was diagnosed with WG (GPA) 14 years ago. About 3 years ago he was diagnosed with macular degeneration in one eye. He has his eyes checked every 12 months since diagnosis and progress of the disease is monitored. There is no change up to date from being first diagnosed. John follows all the dietary advice he is given. macularsociety.org/about-ma... He eats lots of broccoli, spinach, fruit and oily fish etc..

We are both members of the Macular Society macularsociety.org/about-ma...

We "think" John has developed macular degeneration for two reasons....

High Blood pressure

People with high blood pressure are one and a half times more likely to have age-related macular degeneration than those with normal blood pressure.

Genetics - ( John's older sister was diagnosed with macular degeneration about 6 years ago. She is 10 years older than John )

A family history of macular degeneration may increase the chance of developing age-related macular degeneration.

Hope this information helps.

Best wishes

Susan

[Essex-jill in reply to Suzym2u]

Thanks Suzy. I will look at the links you gave. I have hypertension due to chronic kidney failure but no family link. Thank you very much for your reply. Jill

[Hidden in reply to Essex-jill]

I have seen one of your old threads on eyelid twitching with interest. Is this still going on, may I ask? It seems my V also targets eyes. I agree with the genetic factor involved in MD. I'm known to have a risk gene for MD but haven't developed it yet though I had pretty much anything else.

[Essex-jill]

Hi Ferntree. Thanks for your reply. I went on to develope Bell's Palsy in November. I'Am no longer experiencing eye twitching thankfully. I'm glad to hear you haven't developed Macular Degeneration despite a genetic link. Best wishes Jill

[Hidden in reply to Essex-jill]

Thank you for your update, Essex-jill. So pleased to hear that no more eye twitching. I still get this from time to time. Hope your eyes will remain stable as long as possible. I agree with both Suzie and Andrew. There are different types of MDs. You might need to ask which type you may have. There is wet ARMD (age related MD). When the retina cells in the eye get damaged with age, it is known as Age Related Macular Degeneration. There's ARMD associated with higher HDL cholesterol..or unrelated with higher HDL cholesterol..Knowing your expertise in nursing, I'm sure you already know..x

[AndrewT]

Dear Jill,

This might not be much use to you, however-I have several 'overlapping' strains of vasculitis. They appear, according to the results anyway, to be ANCA in nature. I only mention this because one of the first 'signs' that I have any, 'trouble brewing', is redness, of my left eye. This was the eye-along with my brain, kidneys, heart (plus maybe a few 'other ' bits) that the vasculitis first attacked. 'Macular Degeneration' is normally caused be the aging process-no I'm NOT trying to say your getting old! However, I believe, it can be caused by a good number of 'other' factors. I have to have my eyes checked, very regularly-I had them 'done' in December and they are being done again next week. Thus far, clearly I don't know about next week's results yet (there aren't any 'temporal warps'-that I'm aware of-in my vicinity) however my eyes have, thus far, remained 'clear'. In my case the eyes are, not just, 'Windows to my Soul' but also to my vasculitis!

Do 'follow up' the web sites, recommended by Susan, but please be careful of 'unsolicited/un-recommended sites-could be good, could be downright dangerous!

Maybe I'm too careful, yes maybe I am but I don't touch-with a bargepole-any sites that have not, at least, been looked at/vetted by someone I trust. If this sound, a bit, 'reactionary' then so be it-better safe, I say.

I do hope this has been, at least, some help Jill.

Very best wishes.

AndrewT

[Essex-jill]

Thank you Andrew for your answers. I will mention this to Doctor David Jayne at Addenbrookes next week when I go for my treatment. I have looked at the websites Suzy recommended and as I was a nurse for many years I know about inaccurate websites. I'Am only 54 so not that old lol 😉 I will ensure I have my eyes regularly monitored. Good luck with your check up. Jill