Ocular manifestations are common among MPN patients

[PVReporter]

Thanks to Dr. Hans Hasselbalch and team for this innovative research paper!

pvreporter.com/ocular-manif...

[Superwoman]

This was a very interesting read.

I myself have just been diagnosed with acute angle Glaucoma in both eyes nothing there a year ago, kept on getting blurred vision, I felt it was to do with my ET but was told no it could not be.

Had laser treatment to bring the pressure down which it did, but it has now caused me to have cataracts, have an appointment in November to see if they need doing.

Feel it all makes sense now.

[mhos61]

Prior to my ET diagnosis I had rare episodes of what I now know to be called scintillating scotoma. I always mentioned this at the opticians but nothing was picked up on. I thought it must be age related.

Significantly, since starting treatment nearly four years ago for ET (aspirin/hydrea) I don’t experience them anymore, so, definitely related to ET in my case.

[Susana7]

Great article, thanks for sharing. I had repeated episodes of scintillating scotoma before diagnosis, that disappeared after starting on low dose aspirin. I have since had cotton wool spots in my eyes, likely due to interferon. I also had a retinal tear two years ago but doctors say it is unrelated. It left me with massive floaters that obstruct my vision. X

[PVReporter in reply to Susana7]

You're very welcome. Thanks for sharing about "cotton wool spots." Has that improved over time? The research I saw said "best treatment is to treat the underlying disease." I think we are all trying to do that!

[Susana7 in reply to PVReporter]

The cotton will spots resolved naturally without any treatment. I have had them 3 times since being on Pegasys, over a 4.5 year period. x

[PVReporter in reply to Susana7]

Ok, thanks that's good to know.

[Paul_1971]

I used to have episodes of scintillating scotoma but must admit since my diagnosis and subsequent treatment they have gone away.

Very disturbing when it happens.

[Bluetop]

Interesting. Years before my PV was diagnosed I had 2 incidents of 'red eye'. No problems since.

[Hat3]

I was having episodes of scintillating scotoma about one or twice a year up until early last year when I experienced them twice a day for about a fortnight. This prompted a trip to the GP, and then a blood test, and then a diagnosis of ET. I haven't had it since starting treatment.

[Camelian]

Thank you for posting this article it's very relevant to a problem I'm experiencing at the moment

( torturous blood vessels behind the eyes) the aforementioned was identified during a recent eye test and the optician thought it could be related to hypertension? However after reading this article I'm now Wondering if it's actually more related to ET jak2+ ?? As my BP is within normal ranges.

I'm currently only taking aspirin for ET but in light of the risks mentioned in the article I'm thinking the Sooner I start hydroxy the better🤔