Macular Degeneration (AMD) I've now got this horrible disease

Has anyone with Lupus have Macular Degeneration (AMD) Dry..I have just been diagbosed with this in both eyes, I went to the Hydroxychlorequine clinic for an eye examination they diagnosed it but i've had it 4 years however noone mentioned it to me before..

i am 49 and a bit shocked to think im going to loose my central vision, they are not sure if Lupus has anything to do with this, they are saying i'm very young to be diagnosed with AMD as its normally age related..Would appreciate any feedback. Regards Fiona x

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  • Hi Fiona, I am really sorry to hear your news. I have been reading up on this recently, and as I understand it can be a symptom of long term hydroxychloroquine. I dont think its age related, but I think the chances increase once you have been on it for 5-7 years (Ive been on it 5 years) and its related to cumulative dosage - chances increase above 1000g total exposure, but they are still low. Ive asked my consultants about this, since Im trying to stay on hydroxychloroquine safety for as long as possible, to make the drugs work hard. They have reassured me that the chances are slim, and more related to chloroquine and for me the chances will be more meaningful after 10 years, but Im 31 so Im keen to avoid any curve balls in the future. Strangley enough I now want to stay on hydroxy for as long as possible, as safely as I can since Ive tried being without it, and I just dont work. How long have you been on hydroxy? What dosage were you on? Do you see a regular optician or opthalmetrist whos picked it up? All the best, Cat X

  • Hi there. I am 29 and although I don't have macular degeneration, I am very quickly losing my peripheral vision. My optician picked this up and ophthalmology have confirmed it, and it was them that made the link to lupus. I don't take any meds because of this and I already have liver damage, and all this damage is purely down to lupus.

    However this is me, and does not mean that it is the case for you. Hope things get sorted for you xx

  • Hi jf14, I don't know much about lupus, but I do know quite a bit about dry macular disease. As a starting point to learning more I'd strongly recommend contact the Macular Disease Society. Their helpline is 0300 3030 111. They can help with all sorts of info and advice. So sorry to hear you have dry macular degeneration. 49 does sound young and it's usually people over the age of 65 who are diagnosed. Hope this helps! Teky72x

  • I am 48 with systemic lupus. They told me about 4 years ago I had the starting of that but I have herd nothing more. Maybe go to someone else. You know with lupus everyone says different things all the time thats because doctors dont know enough. And I have seen alot of people I think are over treated and the drugs or making them worse. Hang in there!!! Love ya, Krisdy

  • Fiona

    Another one with both! I have been on hydroxychloroquine for 10 years and have had dry macular degenerataion for about the same length of time. Have stayed on 400 mgs of hy. all the time as it normally keeps lupus in check, although I normally am also on 5-10mg prednisilone when it flares - as it did when i had chemotherapy and radiotherapy.

    I also have other issues with my eyes and now have very little vision left (I am 62 by the way).

    There are coping mechanisms for md, and I would definitely recommend getting in touch with the Macular Disease Society - they have an excellent helpline, and you may find it useful to talk to someone who knows what you are going through. Does seem unfair when yet something else crops up. Sometimes it is related to Lupus, but, unfortunately we are just as open to other problems as other people, and even more so as we don't have a good immune system.

    All the best

    Margaret

  • Well thank you everyone for your comments and support. I am on one hydroxy tablet every second day, previousy for2 year I was taking 2per day, I felt my eyesite deteriate, so I reduced them this has now been for 1 year+consultant ok with this, I have stopped this tablet altogether, I'm now just monitoring my Lupus..I have registered with Macular degeneration society which I found helpful saying to take Vitimans for eyes, I have sourced the correct ones+ordered them also changed my diet loads of green Veg..I went to the university eye clinic where they found the AMD I am going back tomorrow see the ophthalmoligist to find out more,however my internet has been busy, I've also been reading up on oxygen therapy;ie airnergy professional machine as on this morning..I will let you know about tomorrow xx

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