Monday, May 9, 2011

Punctate Inner Choroidopathy -Or- My Crazy Eye

Those of you that follow me on twitter are aware I've been having some major weirdness in my right eye over the last couple of weeks.

As someone that has always had bad vision, losing my eye sight has always been my biggest fear. Having an eye do strange things where one Ophthalmologist even said, "I've never seen anything like this before" ... well, it's disturbing, to say the least. I waver between wanting to share with everyone what is going on to just wanting to be left alone and hope for the best, so please understand.

About two weeks ago, I noticed a blurry/fuzzy spot in my vision. I called Kaiser, where fortunately I had already been referred a few months back to Ophthalmology due to 2 spots my optometrist detected on my retina [1]. My optometrist was concerned that I might have Presumed Ocular Histoplasmois Syndrome (POHS) - blood tests confirmed, though, that I did not.  My doctor in ophthalmology told me to come back in 6 months or if I noticed any vision changes. That brings us back to two weeks ago.

I was initially told I'd have to wait until May 10th to see someone, but as every day I had new flashes and fuzzy spots, I didn't want to wait. I showed up at the main hospital and sat until my ophthalmologist was able to see me (he took me on his lunch break). He ordered lots of tests: OCT (retina scan), Optomap (picture of the back of the retina), Visual Field Assessment (fuzzy spots and flashing lights cause problems with seeing little tiny dim flashing lights in peripheral vision...it turns out), and an optical angiogram (where I was injected with yellow dye, dilated and more pictures were taken of my eye to check for bleeding - there was none -  *whew*).

Still, my ophthalmologist was stumped. He could see there were things going on in my retina, but it was nothing he'd ever seen before.  He sent me to a retina specialist for my next visit.

My retina specialist has seen something like this before: Punctate Inner Choroidopathy (PIC for short!). I'd give you a link to a great sight on this eye disease, but... none exists. It's a very rare condition that nearsighted, healthy women in their thirties get.  My specialist gave me a great paper on it, published in the Survey of Ophthalmology in January 2011 by Dr. Radgonde Amer and Dr. Noemi Lois.  Unfortunately, the major conclusion of this paper is that PIC needs more research.

There are no known treatments, and the majority of the cases spontaneously get better on their own with no long term vision impact. It's the side effects that can be problematic, so let's hope I don't get any of those!

Fortunately, as of now, my central vision is still crystal clear and my left eye is 100% normal, so I can still totally and safely function in my daily life.

But, still very freakish.  I have toyed with whether or not to write this blog post - perhaps it's over sharing. I don't know, at this point I kind of want to share to see if anyone has any ideas or luck with any experimental treatments.

So, let's hope I'm in the majority of this one!  And let's face it, there are worse things to get!

[1] In 2008 I had very similar symptoms as to what I'm having now, but was diagnosed with having a perfectly normal vitreous detachment. Well, 2.5 years later, my optometrist noticed the retinal scarring, and presumed POHS.  Drs. Amer and Lois said in their paper, "After 2-3 years, some scars become distinct and pigmented and resemble the scars associated with POHS."  So, I'm betting I was misdiagnosed before. Not that it makes a difference, as there is no treatment for either vitreous detachment (it's caused by age and onsets earlier for the nearsighted folks) or PIC.  But, knowing I probably had this in 2008 and completely got better... well, I'm very hopeful for a full recovery).

September 19, 2012 Update:

As a lot of you have asked, and I've failed to write a new blog entry on this subject, so I just wanted to give you an update!  My eye has stabilized after one oral course of Prednisone and one injection of cortizone in my eye itself. I regained almost full vision, with just a small fuzzy spot in between my central vision and peripheral vision that correlates with scarring on my retina. I was lucky and did not get any bleeding (CNV).  I hope that it stays this way.  And, thank you everyone that has commented and brought to my attention these great sites: PIC World, Eye Wiki - PIC page.  We are not alone! Here's to stable vision!

30 comments:

  1. Hi there,

    I came across this purely by chance and was sorry to see that you weren't aware of any site that is about Punctate Inner Choroidopathy. Well, I run a small support website all about it.
    If you'd like to know more theres some information plus a support forum which you would be most welcome to join if you have any questions,

    The address is www.pic-world.net

    Kind Regards,
    Dave (site admin)

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    1. DAVE AS A 20 YEAR BILATERAL SURVIVOR I AM HAPPY TO HELP YOUR SITE WITH ADVICE
      I ALSO HAVE SOME SUGGESTIONS FOR YOU

      SYDNEY AUSTRALIA

      Delete
  2. Thanks, Dave! Someone on Facebook just sent me that site as well. Not sure why Google couldn't find it!

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  3. The trouble with google searching for the phrase "PIC" will just throw up picture websites, no way round that - wish there was!. But if you search with "punctate inner choroidopathy" it does get to us.
    Anyway, do drop in if you get some time, you'd be most welcome.
    Regards,
    Dave.

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  4. I was diagnosed with PIC in 2006, lost 75% of my right eye vsion but regained most of it about six months later. I still have a few small blind spots, one of which affects central vision. I search the internet and the only site I found was PIC-world, it's great!

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  5. Hi, I am 30 and have recently been treated for this and my vision has improved 80%. I had exactly the same symptoms as you, and I was treated using a injections called Luventis that is used for macular degeneration patients. I had a course of 3 and although not pleasant! My blurriness has improved greatly.

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  6. Hello! Just wanted to let you know there is a website now that explains PIC... I was diagnosed in 2009 and have been dealing with it for several years now. Back then, there was absolutely nothing out there about it... so I was happy to find a page like this that kind of explains more of what it is. http://eyewiki.aao.org/Punctate_Inner_Choroidopathy Hope you are doing better!

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    Replies
    1. Thanks, Ashley! I've also found a lot of great info on www.pic-world.net. I've been stable for about 8 months now, and very happy about it, but always happy to have more references!

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  7. So, nice to stumble upon this page. I gave up on trying to figure out what is going on with my eye years ago, but I was researching Astaxanthin supplements this and decided to throw PIC into the search engine. I first started having eye problems almost 20 years ago, when I was 18. I saw some of the best eye doctors in the country (Massachusetts Eye and Ear Infirmary) and even these world experts didn't know how to diagnose my eye condition. However, one day, on a form I noticed one of my doctors wrote PIC, so I tend to go with that.
    I had both traditional eye surgery (to remove the vascular tissue and scar tissue growing in my right eye) 20 years ago and my vision is mostly stable though I did lose vision (some central/some peripheral), however I have noticed spots, flashes and blurs in my left eye in the last couple of years. I'm glad to see people are blogging about this, it gives me hope that there has been some advances in this arena.

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    Replies
    1. Eggie

      Sorry it took so long for your diagnosis. It's an odd condition that there doesn't seem to be anything you can do to prevent.
      Valerie

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  8. Hi all,

    I was diagnosed with Wet Macular Degeneration at age 40. I was given 2 injections Lucentis at the time (one month apart) and although I have halo scaring in the area the blood had leaked, the black “thumbprint” that blocked my central vision was gone and I was back to 20/20 vision even with the scaring.
    I just went in again because I noticed another “black smudge” forming in the same eye. I immediately called the retinal specialist – they gave me an appt with a different younger doctor to get me in right away and he believes I was misdiagnosed and that I have PIC. I have had the flashes of lights and the blurry vision and was told it was my blood pressure. So now I know that I am not going crazy, but unfortunately have a rare eye disease. But there help if you develop choroidal neovascular membranes (CNV) from the PIC as I did. I just received my first injection yesterday and am praying for full recovery of my eyesight. I have to endure 2 more injection but it is well worth the pain to get your eyesight back.
    There are alot of websites out there now on this topic.
    They know what it is but still don't know what causes it. Good luck to all and seek immediate medical treatment if you notice any blurry or black smudge spots in your vision. If they catch the bleeding early they can treat it.

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    1. HI Sherri -

      Sorry to hear that you were misdiagnosed originally, too! I'm glad you're recovering and I hope that your vision remains stable. Since posting this blog entry , I've met so many kind people and received lots of great websites. I've just added an update with a couple of links.

      Valerie

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  9. I'm 24, female and very short sighted, and I've been diagnosed with this. All the optometrist could say to my questions was 'I don't know' (thankfully there was a visiting doctor in the room who apologised for his rudeness and explained a bit more!). I don't have blurry vision, but I get greenish spots (like after you've looked at a bright light) that last for around a week, and the latest one has distorted the vision around it. Thankfully at the moment they are small and don't seem to be doing much. All the hospital can do is monitor it, and I've not been given any treatment.

    I've got it in my right eye too, and I know exactly what you mean about doctors not knowing what's going on! That's the part i hate the most - not knowing what could happen. I'm terrified of losing my sight but we shall have to see how it goes! Weirdly, I seem to be getting dizzy spells with this. It's flared up twice, and both times I've also had the dizzyness. The ENT doctor says the dizzyness is due to a blocked inner ear, and the two are unrelated, but it's strange that they both come together.

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    1. You know, I had some vertigo around the same time, too (but the vertigo came first). this is a frustrating diagnosis, because we all feel so out of control about what we can do to prevent future flare ups and save our vision. here's to hoping you've seen your last flare up!

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    2. LOUISA NOT SURE WHERE YOU ARE FROM I HAVE WRITTEN A NUMBER OF RESPONSES ON THIS PAGE
      YOU ARE NOT WITH THE RIGHT TERTIARY RETINAL DOCTOR YOU NEED TO SEND YOUR ANGIOGRAMS AROUND UNTIL YOU FIND THE RIGHT PERSON
      IF YOU GET ANY SUDDEN DISTORTION DIFFICULTY READING ETC YOU NEED TO START TREATMENT STRAIGHT AWAY
      LOOK AT AN AMSLER GRID EVERY DAY (ONE EYE AT A TIME) SO YOU CAN PICK IT UP QUICKLY
      SYDNEY AUSTRALIA

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  10. I was diagnosed with pic today. I am terrified but I have to be strong for my family. K

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    1. K - I hope you recover quickly. I got almost all of my vision back and so have many others. take care!

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  11. Thank you Valerie! It puts things into perspective for you. Our vision is something I took for granted. Now I see how precious it is. My doctor has me on a steroid eye drops. So I am hoping for the best. This site is great its good to know that there is support out there. Thank you so much and I will keep you posted.

    K

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    1. K - I had never heard about PIC before, and it took a long time to get a diagnosis. Going through all of those tests, with my vision getting worse every day with no diagnosis/prognosis was terrifying. It took a long time, but I was fortunate and the swelling on the lesions went down and my night vision and most of my vision returned. I know it's not always that way for everyone. I can only hope that I never have another flare up! Good luck!

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    2. AS a PICS SURVIVOR OF 20 YEARS I URGE YOU TO GET A SECOND OPNION DROPS ARE NOT ENOUGH TO FIGHT THIS
      ORAL PREDNISONE IS THE ONLY CURRENT ADVOCATED TREATMENT AMONGST TERTIARY RETINAL DOCTORS AND AS A LAST RESORT THEN ITS THE NOVARTIS OWNED DRUGS FOR THE WET FORM OF AMD
      YOU NEED A TERTIARY RETINAL DOCTOR WHO REALLY CAN CONTROL WITH THIS, READ ANGIOGRAMS OCT AND KNOWS EXACTLY WHEN AND WHAT HE HAS TO ADMINISTER
      YOU CAN DEFINITELY GET A BETTER OUTCOME THAN WHAT YOU HAVE DESCRIBED
      DONT BE SCARED YOU CAN DO IT
      NOT SURE WHERE YOU ARE FROM TO HELP YOU ANYMORE WITH NAMES

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    3. In addition to oral prednisone, I also received a steroid injection in my eye region which worked wonders for restoring vision for me. Same drug, just localized, was my understanding.

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  12. Thank you Valerie your words have comforted me. I appreciate you reaching out. I will keep you posted.

    K

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  13. I have seen doctors for 15 years, every six months so my presumed histoplasmosis did not return. In 2011 I found a histoplasmosis expert in my area and he said it was diagnosed wrong and called it PIC. I have almost no vision in my right eye, only some peripheral. Last week I noticed my left eye was changing, spots, and what I believe is called photosia? the darkness that feels like you stared at the sun. Yesterday my doctor reviewed images and examined me, put his hand on my arm and told me it was active in my left eye. He started me on prednisone and I may suggest the shots so many have indicated as helpful. I am comforted that so many have responded well to treatment and hope that I will get to report back the same. Thank you for this forum.

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    Replies
    1. Angie -

      I'm sorry to hear that your PIC has started up in your good eye. I hope with early detection and treatment that this will be a minor flare up. I did well with a steroid injection to the eye region. good luck!

      Valerie

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    2. ITS A LONG JOURNEY BUT YOU WILL GET THERE
      BE VIGILANT WATCH YOUR DIET USE AN AMSLER GRID DAILY MAKE SURE YOU HAVE THE RIGHT RETINAL DOCTOR
      WHEN YOU GET AN EPISODE TAKE PREDNISONE STRAIGHT AWAY TO STABILISE & THEN PRESENT TO YOUR RETINAL DOCTOR STRAIGHT AWAY
      TAKE AN ANTIOXIDANT SIMILAR TO THE US AREDS STUDY EAT LEAY GREEN VEGETABLES FISH
      NO TRANS FATTY ACIDS CANT EMPHASISE THIS ENOUGH
      I GOT IT ON MY SEOND EYE WITHIN SIX MONTHS
      REDUCE YOUR STRESS LEVELS ITS A DEFINITE CATALYST FOR THIS AUTOIMMUNE CONDITION
      GET SHOTS ON TIME AND PRESENT IN A VIGILANT MANNER
      YOU CAN REALLY FIGHT THIS DISEASE AND MAKE IT
      WE ARE ALL BEHIND YOU
      GET A RETINAL DOCTOR WHO CAN DIAGNOSE YOU CORRECTLY AND READ AN ANGIOGRAM AND OCT TO MONITOR ACTIVITY AND TREATMENT COURSE
      CORRECTLY
      IF HE TOLD YOU HISTOPLASMOSIS HE DOES NOT KNOW THIS DISEASE ENOUGH TO HELP YOU NOT SURE WHERE YOU ARE FROM TO MAKE SUGGESTIONS
      I WAS DIAGNOSED WITH HISTOPLASMOSIS BUT TWO WEEKS LATER I FOUND THE RIGHT GUY THAT WAS AFTER GING THROUGH NUMEROUS SO CALLED HIGH PROFILE RETINAL DOCTORS
      SYDNEY AUSTRALIA

      Delete
  14. This comment has been removed by a blog administrator.

    ReplyDelete
  15. Just removed typos above
    I was diagnosed with PIC 20 years ago where there was virtually no treatment except prednisone
    I have it in both eyes and I am a survivor
    Today there is fortunately more treatments Find the right retinal doctor There a few top ones in the USA who can point you in the right direction
    It must be one who really read an angiogram and OCT results Otherwise when you see something they may not
    Yanuzzi in New York Id recommend but he may have retired by now Try Andrew Chnangs Office in Sydney Australia 612 9221 3755
    They will be able to give you a names for here you live Speak to his registrar
    Get an Amsler Grid Check your eyes every day ONE AT A TIME Keep it on your fridge Be vigilant
    Keep Prednisone on you at all times If you have an episode start at least 100mg and then under medical supervision cut down
    You are your best advocate because you will detect change first before you specialist does
    Following an episode start high dose prednisone straight away them present to you tertiary retinal doctor who will after a while cut you down
    Keep your tress levels down If you get an episode you must cool it
    Change your diet All of the research for AMD applies for this condition shows its a factor
    No trans fatty acids Lower you cholesoterol
    Take an eye antioxidant similar to the AREDS study in the USA
    No heavy lifting Exercise or walk allot keep bone densities up
    Novartis has some good drugs it uses for wet AMD These also can be used for PICS as a last resort with good results
    Find a retinal doctor who knows their stuff
    If they are not decisive they are not the one
    Fortunately things are allot better 20 years on
    When I first went through this patients ended up medically retired
    TODAY Permanent vision loss with this condition does not have to be inevitable
    Sydney Australia

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  16. Hi, I do not know if this post is still active and I hope everyone that posted here is well!!

    I was diagnosed with PIC 9 months ago (at the age of 32). Eventually I developed CNV and am doing injections of Eylea every month. Did a 4 month course of oral prednisolone. 3 weeks ago i finished the course and an in about 2 weeks had a flare. Tomorrow I am going to the doctor and will see what options he will give me. It is crazy scary!!! Just thinking about what might happen! But I hope there are advances nowdays! there are so many people who recover or manage the disease. can you please share your treatments?

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    1. I am so sorry to hear about your progression! I hope that it calms down. My doctors always say that i need to be relaxed to help calm the flare - hard to do when vision is so impacted! But, still, I wish you calm. hugs!

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