Retina

[Charlieapple2018]

Haematologist has referred me to the eye clinic to look at my retinas. The referral came through the post and we didn’t discuss anything about it at our last meeting. I was just wondering if other people have had a similar referral and what might it be for?

[Osteomyelio]

Did your hematologist explain why you need a retina specialist?

My hematologist never mentions my eyes.

[Charlieapple2018 in reply to Osteomyelio]

No, we didn’t talk about it. I see her before the eye clinic appointments So I’ll ask when I see her, I just wondered why.

[ccsial]

Hi Charlie,

My doc said these diseases can cause problems with the retina. About 5 years ago the macular degeneration in my right eye started to become a problem. I have been getting injections and it has helped but lately is getting worse. Thankfully my left eye is still 20-20. Your doctor may just want to be sure your eyes are OK and stop any problems early on.

I kind of thought my macular degeneration getting worse was from ET. now I'm not sure since last year my son, 51, said he is starting to get it too in his right eye. I was about 50 when I first noticed it too and that was before my ET diagnosis at 60. I'm almost 75 now.

I hope your eyes will be fine.

Al

[Charlieapple2018 in reply to ccsial]

Thanks, I was only diagnosed just over a year ago at 41 and my platelets are still hovering around 1600 despite four months of Pegasys so I suppose my haematologist is checking all bases.

[D1i2a3 in reply to Charlieapple2018]

Hi I’m going for eye check up today last year my vision was a bit blurred with high platelets mine are usually 600 to about 900 at the beginning 1325 your platelets seam high they are checking for small blood clots behind the eyes think they ate just like to be safe have hat this for 11 years 6 years Et then MF am on hydroxycarbamide was on 5 tablets a day 2500mg but have had to lower it as was making me anemic think they are just keeping an eye on you Hope everything ok Diana

[Charlieapple2018 in reply to D1i2a3]

I’m quite anaemic at the moment too, a look at my iron levels is on the agenda for the next consultation. I’ve also had blurry vision and aura migraines so a good check up won’t hurt. I just don’t think I want to know the results! Thanks for the information. I’m going to try not to worry about it or google too much!

[EleanorPV]

When my HCT was high it damaged one of my corneas (symptom is double vision in that eye). I saw an eye specialist to have this diagnosis.

[Charlieapple2018 in reply to EleanorPV]

Thanks, so she is checking to see if the high numbers are causing damage to my eyes.

[Marossi]

When I was first diagnosed with PV I went for a check-up with my ophtalmologist. My haematologist didn’t refer me but I had a feeling my vision was getting worse, definitely more blurry, and I had had scintillating scotoma (visual auras) for months so I thought I’d go along and get things checked out. ( I should add that both red blood cells and platelets were elevated at diagnosis)He confirmed that my vision had unfortunately deteriorated quite a bit. But when he learned that I had started treatment with interferon he wanted me to come back for a more in-depth examination of the retinas. Luckily no damage there but he has told me I should come back every six months to keep things under control. My haematologist seemed surprised my eye doctor had these concerns which was a bit confusing. But I figured it doesn’t hurt to have regular check-ups.

[Charlieapple2018]

Thanks for the reply, I’m currently diagnosed with ET calr+ hence the high platelets, but glad to know I’m being looked after. I hadn’t thought about the high platelets having an effect on my vision. It’s a little upsetting to add this to the other concerns, but part of the process and I’ll have to deal with whatever comes.

[Susana7]

Hi Charlie, interferon can cause eye problems. I have been on Peg for almost 4 years, with excellent results, but did have cotton wool spots in one eye a few times (resolves naturally) and so I see an ophthalmologist every 6 months. I also had vitreous detachment in both eyes and 2 retinal tears in the last 3 years but the ophthalmologist says that is unrelated to Pegasys and just due to normal ageing (i am 55 now) coupled with me being very myopic. In general, getting regular eye checks is a good thing to do while on interferon. Susana x

[Charlieapple2018 in reply to Susana7]

Thank for your reply. I suppose if something does come up with the eye clinic, at least it can be treated or it’s effect limited. Glad your vision has been ok.

[Jlah]

Hi Charlie. Good luck and hope it’s nothing too serious.

[Charlieapple2018 in reply to Jlah]

Thank you, fingers crossed! 🤞🤞🤞

[wormwood]

Hi, just prior to diagnoses of et jak 2 .... I had a massive venous eye bleed in the right eye, didnt hurt, but basically went blind in that one eye overnight, eye specialist sent me to heamotology at st James Leeds.... who went on to diagnose me with et.... I had high platelets and had for some time no one picked up on this because I also have an autoimmune problem too.... had an OP to remove the blood as it wasnt clearing on it's on... everything fine now.... on interferon 12mu per week....

[Charlieapple2018 in reply to wormwood]

Thanks, it seems eye problems are big part of MPNs and I hadn’t considered that before. At least I know the NHS is looking after me well.

[wormwood]

It sounds like they're covering all bases which is good xx