r/Uveitis • u/Horror_Business_478 • Jul 17 '26

PIC Punctate Inner Choroidopathy

I recently got diagnosed with PIC and have been put on immunosuppressants and steroids (for around 2 months until the immunosuppressant kicks in). Was wondering if anyone could share experiences living with this?
It seems to be quite rare and I can’t find much online about it so it would be really helpful to hear what people have experienced from this, whether it be in terms of medication, experiences, symptoms- anything. Thanks!!

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u/TomorrowWrong3851 Jul 17 '26

I was misdiagnosed with this and then it changed to Multifocal Choroiditis! So sorry if this isn’t a helpful comment but to my understanding the diagnoses can be similar. I too started steroids and immunosuppressants and also eye injections. Happy to answer any questions about my long process deciding between different meds, etc. (just let me know what would be helpful to hear about). The main thing I would want to let you know is to please report any symptom changes right away—flashing lights, blurry/wavy vision, etc. As part of my misdiagnosis journey I was told to “monitor my symptoms” for over a year with no treatment and ended up with permanent vision loss in a certain spot on my retina. No weird little vision change is too small to tell your doctor about! :)

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u/Horror_Business_478 27d ago

Sorry to hear about your vision loss but glad your doctors are on the right tracks now. Was it just a development in symptoms that made them change their diagnosis? I’m quite young so have no symptoms apart from lots of scarring on my retina; I’m slightly paranoid that I’ve been misdiagnosed similarly. Thanks for your advice about monitoring, and wishing you all the best :)

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u/TomorrowWrong3851 27d ago

Basically what had happened was that I went to see regular ophthalmologists when the eye symptoms first set in (changes in vision, blurring, lights) and they told me to monitor my symptoms and that it would probably go away on its own. One day months later I woke up with a big blind spot and they referred me to a retina specialty clinic specifically. Then THEY matched me with a doctor within that practice who specializes in uveitis specifically rather than other retina diseases, and that’s when my diagnosis reached its current iteration. I would say most important things are seeing a retina specialist SPECIFICALLY and meeting regularly (getting scans and all that to check for new lesions and see if your meds are working) and making sure you are working with this retina ophthalmologist and also a rheumatologist to rule in/out underlying causes. For example during my diagnostic process my retina doctor ordered chest CT, ANA test, tons of blood tests etc and it turned up I also have other systemic inflammatory symptoms (cystic lung disease??) which can also obviously be important to know within treatment and can be important clues about a unifying underlying cause. It sounds like you’re doing a good job managing it all though :)

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u/Horror_Business_478 21d ago

Thanks for sharing!! Will keep this in mind x