Sjogrens and wet AMD

[St-Cherry]

Hi everyone. I've had Sjogrens for many years and am now going blind from wet Age Related Macular Degeneration. Does anyone else have these 2 diseases?

[Megansheart]

So sorry to hear that St-Cherry.

No, I don’t at this point have macular problems but may I ask a question?

Over the years have you had regular AMD eye checks done? If so, how long ago did they start revealing the onset of macular deterioration.

Megan

[St-Cherry in reply to Megansheart]

The right eye is 'legally' blind now. I had about 12 injections starting about 2 years ago but they didn't help. The left eye began about & months ago but is worsening daily now. I stopped going for injections because they didn't help that eye either. Last month, I could read with +4 spectacles. They barely help now, just one month later. Things are getting darker and more out of focus all the time so specs aren't helping any more.

[Hidden]

Hi St-Cherry, Yes I have macular degeneration in both eyes. Have lost the left eye to wet-macular after about 24 injections spread over a few years - which only prolonged the inevitable. Have dry macular in the right eye and to date still have OK vision out of that one. Have cataracts in both eyes as well. Was to have the cataract removed from the bad (L) eye in an attempt to gain some sight from that - even peripheral vision to help with depth perception. The Opthalmologist said it was too far gone, and an op would be nearly worthless - and as I also have Fibro and SS, and my GP would not give me any pain killers, the Opthalmologist had no choice but to tell me he didn't think it would be worth my while to go ahead with the cataract surgery as it would most likely cause a major flare in both Fibro and SS and without pain meds I would be in a bad way. He recommended I change Drs - under review at this point. Where do you jump - from the frying pan into the fire?

Sorry to hear you are being bothered with this as well, no joke is it when you lose your health - and then your senses?

PP

[St-Cherry in reply to Hidden]

Hi 2WoombaGirl. I'm so very sorry to hear that! Thankfully, I have a large support group of family and very special friends which makes things much easier. I can't see the prices of products in stores but no one has been nasty when I ask strangers to read them for me. Can't you get a referral to see a rheumatologist? He/she would give you the right pain meds and they know all about autoimmune diseases.

[Hidden in reply to St-Cherry]

Hi, Yes. I have been trying to get a referral to a Rheumatologist but there is only a limited number where I live - like 1 or 2, and the waiting list is nearly a year long even before you get put on the proper waiting list - if you can follow. I have asked and asked, but the Drs here think it would be a waste of time, and won't give me a referral. Have seen about a dozen or so and no luck. Maybe my new Dr will - who knows, but I can't understand their reasoning for refusing. I thought Drs are supposed to be looking after your health - not their own bank balance.

Have a good day.

PP

[wsjkcj1]

Hi are you currently treating your SS with Plaquenil or another drug? Does the DR think the degeneration is due to SS or just in addition to it?