I would like to know how others who have any eye diseases that are know to be a symptom of AS how they deal w/ it & what, if any solutions or medications they may use or may be helpful to others.
As I have told many others, I was for 3 yrs told I have dry eye when I knew it was more than that. When I was tested poistive for the HLA-B27 test for AS & then told, ( by my new opthamologist,) that yes I have dry eye but also uveitis, which by now has caused almost full blindness in my left eye.
I saw the opthamologist last month who said, " We tried the plugs, cauterization, different medical eye drops, but we are stumped as to what to do now. You are going blind in your left eye. The only thing we can think of is to send you to the pharmcuetical school downtown, to their optometry specialist to see if you can be okayed on a trial/ testing they're doing on a new eye lens cover."
I forget the name of the eye lens but from what they told me is that it's almost like contact lenses but much larger. To which I told the doctor that I could never use conact lenses because my eyes were always too sensitive. She replied that, no, these lenses don't affect the eyes like contact lenses do, except that it may take a few times to get used to putting them in.
She said the lens will act as a protective layer over the cornea that I no longer have, ( the cornea layer that is, lol,) which also helps to keep the tear ducts working normally so that maybe my eye can be healed. The only other option is surgery, which they said is the last resort, especially since it doesn't always work.
So maybe someone out there has the same issue and as bad as I do and maybe some solutions or ideas on how to cope.
I'm so sorry to hear you are having such a hard time with uveitis and finding treatments that work for you. I deal with iritis and have some scar tissue buildup that impacts my vision a bit, but not as extreme as what it sounds like you are experiencing.
I know there are many members of our community who also deal with iritis and uveitis, and hopefully someone can relate to your experience! Are you on any medication for your AS? I know my ophthalmologist had strong opinions on what medications I take because she wanted something that would help my eye issues as well.
Finding good coping strategies for the ups and downs that come with chronic health issues can be really difficult- how are you doing now?
-Erin (Community Member)
Thank you Erin. I am doing a little better after seeing the specialist at the schools optometry unit. They tried a lens on1 eye & waited a 1/2 hr to notice if I noticed a difference. YES I did!! That means I am eligible for the 2 lenses, so they took measurements specifically to my eyes and ordered them, now I wait 2- 3 weeks, ( UGGH) for them to come in. Then they will teach me how to put them in. It will be a 2 hr visit. The lenses are called Sclero lenses BTW.
I am so happy and hopeful for the 1st time in 2-3 yrs. The Dr. i saw said I had 1 of the worst cases of AS caused uveitis he has seen, especially in someone so young. Plus he said he usually sees it in males, but did admit that's because a lot of Dr.'S out there still don't realize that women have different symptoms of AS and at different ages.
As he said, they are NOT a cure, but if my quality of life is better, my stress levels maybe will go down & then my inflammation might just go down...praying!!
I was on Humira but had my 2nd hip replacement last July & couldn't be on it for 1 month before & 1 month after. And the RA did tell me once u get off the meds for awhile, they sometimes don't work anymore. I did go back on for 6 months w/ no changes, so she took me off & is looking at other biologics. I have asthma & mild COPD so can't go on several that they offer. We;ll see. Plus I now have to schedule surgery for both knees, so I don't know if I should just wait until those surgeries are done to go back on a biologic. That is a question I will be asking the surgeon and the RA next wk.
Thanks for caring and sharing!!
My right eye has been an issue since I was a kid. I wasnt diagnosed for AS until I was 33. It all makes sense now.