Are visual disturbances related to ET or hydroxyurea?

Posted by et1055 @et1055, Nov 4 10:58am

I had a very disturbing event happened about a week ago. My Vision suddenly changed – – the room suddenly looked like it was divided into several rectangles blocks and they kept moving around quickly. It lasted for about 5 minutes and then quit but left me feeling very weak and tired for about 24 hours.
I have had silent migraines in the past with mild visual disturbances – – but this time it was so dramatic it was downright scary.
My hydroxy dose had been changed from one 500 MG capsule per day to two on the Weekend and one during the week days. Since it was after these increased doses, I was suspecting perhaps that was the culprit🤷‍♀️
Has anyone else experienced visual disturbances?

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I have had PV for five year. I was diagnosed with macular degeneration three years ago. I don’t know if that was side effect of the PV or separate. I’m not on any medication at this time for the PB however they are strongly suggesting JakaFi. That medication indicates possible dry eye my eye doctor said it would probably be OK but we would watch it

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Hi, I've been following along, interested because I've had ET w/Jak2 for almost 2 years. Earlier this year, I started to lose what I describe as chunks in the middle of my field of vision. Read a book and suddenly part of the page disappears. I read music, and that became a huge problem. Diagnostic tests showed a macular pucker in my right eye, and it was continually getting worse. No one could say why, just that these things happen as we age. I'm 72.

In April I had a vitrectomy and membrane peel. Vision is now amazing, although I'm still dealing with some elevated pressures in the right eye (mid 30's), controlled with Rx drops.

Funny how these things just happen and no one is putting the dots together.

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Yes me too having little blurred vision. Taking hydroxyurea 500 mg once at night every day and twice on weekends . Feel medication may be the reason for changes in vision . My age is 62 and fitness is good as exercise like 40 mnts morning walk and 30 mnts swimming everyday . This exercise routine feel is the best medicine along with whatever medicine dr gives us . This surely improves self healing and found headaches too rarely comes due to morning one and half hour of exercises . Yes food too playing important role . Lesser we eat , improves healing ., preferably vegetarian . Regards and well wishes to ALL

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I have ET (CALR) and Pots. No change in vision but my ophthalmologist changed my yearly appointments to every 6 months. There’s a higher possibility of change and it needs to be watched more closely.

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