PIC - Punctate Inner Choroidopathy

[Rome2023]

Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others who have the same condition. Thanks.

[Carol_MacularSociety Partner]

Dear Rome2023,

Please refer to the links below on PIC

macularsociety.org/macular-...

Here is a link to our webinar on PIC which you may find useful

macularsociety.org/support/...

We have an online support group for PIC

macularsociety.org/support/...

The Macular Society Helpline is open 9am – 5pm Monday to Friday on 0300 3030 111. Alternatively, you can contact us via: [e-mail]

Best wishes,

Carol

Macular Society Helpline

[Guy_Incognito]

Hi Rome2023, how are you getting on with this, 6 months down the line?

My wife was diagnosed with PIC two weeks ago so we're trying to learn about this condition and what the future holds. We went to the eye doctor yesterday who said as it's stable there's no need for steroids or injections at the moment, and to go back in a month. Any advice you have would be much appreciated

[Rome2023 in reply to Guy_Incognito]

Hi, sorry to hear about your wife’s diagnosis. I’ve had 4 eyelea injections to treat the Choroidal neovascularization that I had as a result of the PIC. I don’t know how much info she’s been given but this CNV has affected my vision. Despite the treatment, I now have a very blurry eye, which is permanent, the treatment only helping to stop further damage (scarring) and deterioration. I have PIC in both eyes, scarring more pronounced in my active eye, and that’s the one that had the CNV. The flare up I had in January has now stabilised and I am due to be reviewed in two months. I queried about steroids and autoimmune treatment and was assured by the professor that they would be the last resort. I think that’s fair from my conversations in the international PIC Facebook group and the PIC support group. I don’t want to have treatment if not required. But it’s important to be your own advocate, feedback is often we will know if we have a ‘flare’ even if it’s not showing on OCT scans. Thankfully I live close to my eye hospital (30 min drive) so have had no problem with going to A&E to alleviate my concerns when things have not felt right. Other niggles such as posterior vitreous detachment and mebomian gland dysfunction have been diagnosed in addition, but are not PIC related. But I was glad to get the reassurance. My best advice would be to monitor vision by checking against the Amsler grid at least weekly. As soon as things feel ‘off’ she needs to go to the hospital within 24-48 hours. That time frame was emphasised by the professor. The sooner treatment starts the better. I’m no expert but others have had this condition for years and have been stable and for others deterioration has happened quickly so time is of the esssence. But the fact she’s been diagnosed is a massive positive as now she’ll know what to look out for. When I was diagnosed I had no idea that this condition was so serious and just thought naively that the issues I was having was linked to me needing a new prescription, so was very grateful that the optometrist noticed something amiss on the OCT. I’m trying to be really positive and pragmatic, I think that’s the best way to approach it. Perhaps I’d feel different if my vision was getting worse but while it’s stable, there’s no point worrying about something that I can not change. That being said, the professor did say I should try and reduce inflammation more generally in my body by eating healthily and exercising, good advice to live longer anyway. Happy for you to reach out and keep in touch. Good luck with everything. Hope that’s helpful. If you put Punctate Inner Choroidopathy into Facebook, you should be able to join the private group.

[Guy_Incognito]

Thank you so much for the detailed response, and I’m sorry to hear about the issues you’ve had, and the permanently blurry eye. This has been very useful for us, and the amsler grid is new to us. We’ll definitely monitor it and if there are sudden changes we’ll make sure to get to a hospital within 24 hours. Thanks again!