I am almost 58 so not that old!
I had a routine eye test yesterday, a... - Hughes Syndrome A...
I had a routine eye test yesterday, and was told I have early stages of macular degeneration, has anyone else been diagnosed with this?
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Ekiddle
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My mum was diagnosed with macular degeneration about 3 years ago in her left eye it was diagnosed as 'dry' than last year she was diagnosed with 'wet' in the right eye she has to go monthly to have injections first few seemed to work but they dont seem to be anymore.
Ah thank you so much for taking the time to to look and reply to me, I am due to go to the Lupus unit in May so I will tell them anyway, I will keep you informed of any news!
I'm also 58 and was diagnosed with macular degeneration in my late 40's and shortly afterward with APS after a severe clotting situation. The docs never put the two together but who really knows. Since my thirties I've had bouts of iritis and uveitis and they just determined I have Bechet's and that is related. I'm legally blind now but have adjusted fairly well. I hope your macular situation stays stable. It took me several months to adjust. But with proper visual aids I hope you do well. Best of luck. I wouldn't be surprised if they make a connection between all of these auto-imune conditions. I also have lupus and ulcerative colitis.
Thank you so much for taking the time to reply to me, I really appreciate it, I'm sorry to hear you have the same and that you have lost your sight, I was diagnosed 10 years ago with APS and Lupus after having a Pulmonary embolism and a mini stroke, so it could be related, I will ask when I go to the Lupus unit in May, I will let you know if I have any more news. Take care xxx
Hello,
sorry to hear about your diagnosis.
My nan, dad and uncle all have macular degeneration. My nan is registered blind, she can only see out of the sides. My uncle is having problems with the sight in one eye now. But my dad still seems to be fine even though this was diagnosed some years ago (all the family over 50 were checked as is hereditary?).
Obviously I can not offer any advise here, but just to let you know that it doesnt always mean that you loose your sight. They were told that cutting out fat and generally clean healthy living would help keep the condition at bay. No medication was perscribed. To my knowledge none of them made the healthy changes! My dad was told that depending on where the degeneration is depends on the effect on eyesight, as i said he is experienceing no problems 10years on from diagnosis. So I will keep my fingers crossed for you that your eyes do not get worse. x
Thank you very much that's made me a lot happier! xx
Hi Ekiddle, I'm sorry it took me a while to get back to you. I know you asked about Bechets. Many of the symptoms overlap with the SLE such as the painful joint swelling and sores, weakness etc. I think the iritis and uveitis and painful sores in my mouth added to the infarct in my small intestines which caused gangrene internally led to the diagnosis. He also did several pin prick tests of my skin which became inflamed afterward. I think all of these things are connected. Basically our bodies rejecting itself. I just hope there is more research. I would love to get off of so many medications. Especially the high doses of prednisone and warfarin and plaquenil etc. I also have to use prednisone drops in my eyes when I have flare ups. I wish you the best and please let me know how you are doing with the macular degeneration. XOX. Florence
Are you taking Plaquenil? A particular type of macular degeneration can be caused by long term use of Plaquenil. We're really fortunate that treatment of this eye condition has improved a great deal just in the last 10 years or so.
Yes I am taking plaquenil, I did mention this to the optician, but he said it wasn't caused by the medication, I go to Tommys in May, so I will ask them, but thank you for your reply. I will keep you all informed!
