Newbie - Punctate inner choroidopathy, high myopia and CNVM

[ldean]

Hi everybody - I just wanted to introduce myself - I'm Laura 39 ... I have been diagnosed with PIC as well as CNVM haemorrhage's since December 16, I was wondering whether there are any others with PIC here on this site? The supportiveness from everyone in general has been fab, and the macular society - you guys are great too, I'm so pleased to have found such support as its not been an easy 10 months to say the least.

[Rosalyn-helpline Partner]

Dear Idean,

I am sending a couple of links that may be of some interest, in case you have not had these previously:

pic-world.net/

uhb.nhs.uk/punctate-inner-c...

In addition, are you in contact with one of our Working Age and Macular support groups (W@M group)? They are a great source of information and support. Please contact us if you need further details.

Please do not hesitate to contact us if we can be of any further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Ayayay80]

Hi Idean

I am so sorry to hear of your eye problems at such comparatively young age. I fully understand that things have been difficult for you. Do you rececive treatment for your CNVM? And if so, I hope it is doing at least some good.

I have no personal experience of your condition, only what I have read about it. I am sure you will already have found out about as much as possible. All I would like to add is that, whatever our individual eye conditions are - and there seem to be dozens of different ones - we all like to share our concerns and offer our support. We are always here to listen.

Very best wishes

[ldean in reply to Ayayay80]

Hi Ayayay80,

Thank you for your lovely reply, I have found everyone so supportive despite everyone going through their own difficulties ... it really is heart warming :).

I have had lucentis injections for my CNVM which have made a huge difference, although the first CNVM back in Dec 16 was debated by many doctors which subsequently delayed my treatment by 21 days, thus leaving me with a scar to my central vision. I argued for a second opinion back then and was reluctantly given the injection (consultant initially told me that nothing could be done, even though I had lost the majority of sight in my RE) Thankful the injection helped tremendously and I've come from seeing virtually nothing in my RE to being able to read half way down the Snellen chart at my hospital. I had another CNVM in Aug, but was injected the after 2 days, my vision deteriorated very fast (counting fingers) but thankfully I am back again to half way on the Snellen

I am thankful for the sight that I have and try to remain hopeful and positive that further CNVM will not occur and that the PIC will stabilise and improve over time.

x Thanks again everyone for the ongoing support x

[kalahuchi]

Hi Idean,

so sorry to hear of your ongoing eye problems. I have had myopic cnv (I think opthalmologists use slightly different medical jargon for similar conditions) for a couple of years now although I was first diagnosed with "macular degeneration" in the 1980s when I was in my early 20s. At that time there was no proper diagnosis and no treatment either so I consider myself very lucky to have developed myopic cnv less than a year after Lucentis had been approved for use on the NHS. Two years on my eyesight is still holding.

My understanding is that the shape of our eyes means the retina is stretched very thinly and easily damaged causing fluid leaks and new blood vessels to form. Both of my eyes are affected now but I find its a bit of roller coaster ride sometimes as the leaks are so unpredictable.

The Lucentis is holding my vision at the moment, but is not as effective as it once was. Eyelea is soon to be approved for our condition (NICE tell me it should be available to us all by 1st December) which is fantastic news for those of us who aren't responding to Lucentis,

As far as denying you treatment is concerned, it is disgraceful. Sometimes I have found that doctors are so busy that they don't keep up to date on changes in legislation regarding our treatment, especially as our condition is not very common. There is sometimes confusion about the criteria for treatment. It is different to that for AMD where treatment cannot start until vision has deteriorated sufficiently.

We're all here for each other on this forum and I agree the Macular Society are a fantastic source of support.

[cwc123]

Hi Idean.

My consultant thinks my condition may be PIC. I started with a blind spot in my right eye about 18 months ago which then lead to CVNM about 6 months later. I have had 3 Lucentis injections (the last in April) and am now on 6 weekly check ups. The vision in that eye is now very poor. I went through hell for months but am now clinging on to the hope that the vision in my good eye will not be affected. My consultant told me PIC is less likely to affect both eyes than other conditions. Who knows? I am 51 years old and highly myopic. Good luck to you. How is your vision? It is not easy but try to remain positive.

[ldean in reply to cwc123]

HI cwc123,

It was great to hear from you, yes staying positive is key I think ... I truly hope your good eye behaves itself.

The PIC eye, is it the PIC which is causing the poor vision or the CNVM ? Did the Lucentis work ? .. I have been told that PIC is self limiting, in that it can literally just stop when it feels like it and you may never see it gain (no pun intended).

Are you in the UK, there is a PIC specialist in Birmingham who is marvellous, I went to see him and found him so reassuring, knowledgeable and he absolutely gave me hope for the future.

take care x

[cwc123 in reply to ldean]

A little bit of both I think. But mainly the CVNM. I had a small blind spot to start with. Was reassured it was probably PIC which in most cases never causes any further problems. The vision deteriorated almost overnight. I went for emergency appointment and told there was a bleed but it was stable and nothing was done. It deteriorated further about a week later and that's when I had the first injection. The vision did improve slightly and I can now see generally with that eye but cannot read with it. I would be snookered if both eyes were the same. I feel if I had had the injection straight away I may have had a better outcome. I am very wary of changes now and make an emergency appointment if I feel there are any changes. I have six weekly checkups but have not had an injection since April.

I have been in touch with secretary of the Birmingham specialist since reading the reply to you from the Macular Society. I am hoping for an appointment.

[cwc123 in reply to cwc123]

Idean

I was wondering whether you are continuing to see the consultant in Birmingham or was it a one off appointment. Has he suggested any treatment?

[Nickynacnoo in reply to ldean]

Hi ldean, I've recently been diagnosed with PIC and saw your post. I hope you're managing well with it. I noted you've mentioned a specialist in Birmingham - would you mind sending me the details, please? I'm not overly confident in mine.

[Lauraa94]

Hi, I was diagnosed with Punctate Inner Choroidopathy in 2014 at the age of 20. It is really interesting to hear other people experiences of PIC, as I haven't come across anyone else with the same condition until now. My optician spotted something wasn't right during a routine eye test, I was then referred to my local hospital where I was miss diagnosed, it was later diagnosed as PIC. I have had a few flare ups over the last years which has caused my vision to reduce in my right eye, but my condition is currently stable and treated by preventative treatment using immunosuppressant tablets.