Help others with uveitis find inspiration and guidance.
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Skip the ER or urgent care and go straight to an ophthalmologist whenever you have concerns. Get comfortable with your doctor, get used to eye exams with the SLIT scope, IOP [intraocular pressure] tests, and learn how to properly use eye drops so they don’t drip down your nasal passages and wreak havoc.
Things will get more manageable over time -- you’ll start to recognize your symptoms prior to the flares. That makes it easier to manage your flares in a quick and timely manner, so they don’t last as long.
I have had many flare-ups over the years. I have taken oral steroids, topical steroid eye drops, dilation drops, and injections in my eye. The best advice I can give is to find a great ophthalmologist that will work with you.
Speak up when things don't feel right with your body. My vision went from excellent to blurry and weird practically overnight. After my conjunctive uveitis diagnosis, I was treated by a special laser to help strengthen my retina. And now, 10 years later, I’m still symptom-free.
Uveitis may be lifelong, but it’s manageable. It’s normal to feel helpless and depressed. People around you can’t fully understand the pain, fear, and distress of this condition. Just know you are not alone, and there are even support groups and organizations you can join for free.
Uveitis is a chronic condition, so you need to have a good relationship with your retinal specialist and ophthalmologist and keep all your appointments. If you have any flare-up of symptoms, no matter how small, have it checked out immediately.
I did a year of yo-yoing with eyedrops and attempting slow tapers with no success. I finally found my answer in an injectable biologic therapy to manage my now chronic anterior uveitis. I will likely always carry emergency steroid and IOP-lowering drops on me at ALL times, which is a good idea for anyone dealing with uveitis.
I have a prepared kit that is prescribed by my ophthalmologist that I carry with me all the time. If a flare starts, I go ahead and dilate, start my steroid drops, and call my doctor. I don’t recommend doing any of these things without consulting your ophthalmologist first.
In retrospect, even as a physician, I didn’t understand just how much damage uveitis was doing to me, in part because my symptoms were not always typical. Unlike many people with uveitis, my eye rarely turned red. I knew the attacks were happening primarily by vision changes and most importantly the headaches.
One thing I discovered through my uveitis treatments is that I’m a 'steroid responder,' meaning that instead of helping eye pressure, steroids actually make my eye pressure worse. Figuring that out wasn’t a fun process. But in the end, I think it helped me see that when it comes to my uveitis, the more honest communication with my eye doctor, the better.
The best advice I have is to be as proactive as possible in treating the disease and get a second opinion sooner than later if you feel that things are progressing, or that your doctor is not paying attention to your complaints.
Don’t be discouraged if your uveitis promptly returns when you taper meds. This just means you have to develop a long-term plan to manage it.
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