New onset uveitis while weaning steroids for GCA

Posted by pmstrauss @pmstrauss, 4 days ago

Anyone have experience of developing uveitis as they have weaned their steroids?

I was diagnosed with GCA 6 mos ago. On Actemra. Down to 15mg prednisone. A month ago had meteor showers of flashing lights in R eye. Saw ophthalmology. That part has resolved but my eyes had been kinda irritated which I attributed to dry eye/compurer imete strain but got worse with bad sensitivity to light and eyeball ball pain . Saw optho yesterday and newly diagnosed with uveitis. He said my eyes did not like the decreasing steroid. Now will be on steroid eye drops.

Waiting to hear back from rheumatology about if I should go down to my scheduled 10 mg this week.

Would love to hear others’ experiences. I really want to get off the oral steroids!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Mike | @dadcue | 4 days ago

Did you enjoy the meteor showers of flashing lights? I would have every kind of visual disturbance imaginable. Seeing things can be dangerous. I saw what looked like fireworks going off in front of my face. I turned and ran away until I realized it wasn't fireworks because there was no noise. Had I been driving ... I'm sure it would have resulted in a car wreck.
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Okay ... The exact same thing happened to me. I had a long history of recurrent uveitis for many years before PMR was diagnosed. During my 12 years of oral prednisone to treat PMR, I can't remember any uveitis flares. In order to get me off prednisone, my rheumatologist wanted me to try Actemra to treat refractory PMR. Actemra worked great for PMR and allowed me to taper off prednisone. Unfortunately, within 2 weeks of tapering off prednisone I had a flare of panuveitis and needed 60 mg of prednisone again.
https://my.clevelandclinic.org/health/diseases/panuveitis
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I have detailed what followed in other posts. There was an apology that Actemra wouldn't work for uveitis and I would need a different biologic. That isn't necessarily true.

pmstrauss | @pmstrauss | 3 days ago

Thank you for responding!

Were your “fireworks” a manifestation of your uveitis? Optho thought I was having floaters but they truly were “fireworks” and not what my understanding of what floaters are. It was in followup from that when my eyes were irritated and sensitive to light that he diagnosed the uveitis. I didn’t know the “fireworks” could be part of it.

I will look for your other posts.

Mike | @dadcue | 3 days ago

In reply to @pmstrauss "Thank you for responding! Were your “fireworks” a manifestation of your uveitis? Optho thought I was..." + (show)

I had every visual disturbance listed on the Cleveland Clinic link. They were light flashes and Cleveland Clinic defines them when you click on it.

"Photopsias (Eye Flashes)
A photopsia is a visual disturbance, a flash of light that happens without a light source. You may see sparkles or shapes like lightning bolts. It can be nothing, or it can be a symptom of another condition."
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Floaters were different:

"Eye Floaters (Myodesopsias)
Eye floaters happen when your vitreous humor (fluid) changes its thickness. This causes you to see squiggly lines or threads. Floaters usually happen as we get older and may not need treatment. If you have a sudden onset of many floaters, see your eye care provider."
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Some of my floaters were actual white blood cells ... very distinct round spots. There could be hundreds of them before everything turned into a dense white fog. When my eye was totally fogged over, I wouldn't be able to see my hand in front of my face. My other eye would be perfectly fine so I could still see with one eye only.

Fortunately an ophthalmologist can see everything too with a dilated eye exam.

"Active uveitis is the presence of white blood cells in the eye's fluids (aqueous humor and vitreous humor). These white blood cells, along with other inflammatory debris, can appear as floaters, which are spots or strands that appear in the field of vision."

It would take a big dose of Prednisone to stop the inflammation. When I could see all the inflammatory debris floating around I knew things were improving. The debris I saw were broken white blood cells and other things that had lost their shape.

All the changes could happen quickly in a matter of a few hours. Usually the changes would happen overnight. If I was lucky and I could still see ... my eye would be light sensitive and beet red. Nothing that I could identify triggered my flares of uveitis.

My ophthalmologist classified some of my flares of uveitis as "extremely aggressive" but some flares I classified as "wimpy." My ophthalmologist laughed but all of my flares had to be treated quickly and aggressively. I always started with 60 mg of prednisone and sometimes needed to increase it to 100 mg which was all I could tolerate.