Are visual disturbances related to ET or hydroxyurea?

et1055, I found this comment from Colleen, one of our monitors, on another thread. I myself haven't explored the link she provided, but it might be of interest.

I am so sorry for the really scary episode you experienced.

in reply to @pesterthief "Has anybody had any eye issues with?myelofibrosi?" + (show)
@pesterthief, I found this information:
"Primary idiopathic myelofibrosis is a rare myeloproliferative condition which can present with associated ocular features like intraretinal haemorrhages, vascular occlusion, retinal neovascularisation and angle-closure glaucoma." https://pmc.ncbi.nlm.nih.gov/articles/PMC6557368/#:~:text=Primary%20idiopathic%20myelofibrosis%20is%20a%20rare%20myeloproliferative%20condition%20which%20can,neovascularisation%20and%20angle%2Dclosure%20glaucoma.

What kind of eye issues are you experiencing?

I haven’t but my ophthalmologist changed my yearly visit to every 6 months because you need to be watched more carefully.

I would call your doc asap and report it, to get it on the record if nothing else.

Here's a couple of long anecdotes that basically illustrate how visual distortions in ET patients can manifest in different ways and may not be related to ET or meds at all:

I went blind in one eye one afternoon when I was teaching, at age 59. Chalked it up to a migraine aura, but had a "shadow" in my peripheral vision for weeks after that episode. A year later, I was diagnosed with ET.

I mentioned the visual episode to the hematologist. She said, "Hmm," but since I had no stroke symptoms like numbness and it went away, she didn't think it was worth investigating.

I do get a more typical migraine aura very occasionally (maybe once a year), usually without the headache, but with nausea and the brain fog that follows. Current hemo says she doesn't know if it's ET related, especially since my mom, who did not have ET, had frequent migraines.

Dad also had ET and before his diagnosis was always asking me, "How many ducks do you see in that picture?" Or "How many apples do you count in this bowl?" He said he had trouble "seeing the whole picture."

We didn't know then that visual distortions were part of the ET landscape, so he just figured it was "old age."

Dad's visual distortion was a constant for him whereas mine cleared up. Neither Dad nor I had any sign of stroke with these visual distortions.

I did not noticed that the HU made any difference in my migraine symptoms. Dad's visual issues did not clear up after he started HU.

So I have nothing conclusive to offer except that, yes, ET patients have weird visual episodes.

I had a change of my vision while on Hydrea. I went to my eye dr and my cornea was swollen. He asked me had there been a change in my meds. I told him about the Hydrea. He immediately asked did I have really dry skin or sores in my mouth. My answer was yes. I immediately contacted by hematologist and he discontinued it and put me on Angralide. I could not take that either. I am now on Besrimi injections every two weeks. Doing good so far.

PV can cause occasional blurred vision. My eye doctor said we are prone to clots so we need to check behind the eyes and we can have retina issues from the excess red blood cells. Dry skin and tender gums can be from the meds but dry skin can be more from blood cancer diseases I believe. Good luck and I hope this third medication works for you!

ET-CALR patient. My eye doc always checks me for ocular clots. Not real worried about it since I take my meds and CALR carries half the clot risk as JAK. But at 70, things can go sideways fast. I also have blurry vision at times, but I suspect that has more to do with my many allergies. Leaf mold has been extra bad in Michigan because of the very warm autumn.

My eyes are all red and irritated all the time. Thanks so much for your information.

I’d contact my eye doc asap - I have an excellent eye hospital near me with an ER bec you always need a backup plan. Wherever you go, you shouldn’t put this off. It may or may not be related…

I used to see my eye doc once a year but he changed it to every 6 months bec of my meds. No new problems for me but it needs to be closely followed.

Good luck.

I have talked to my oncologist about this, but they weren’t all that concerned, but I am. They did refer me to an ophthalmologist, but of course I can’t get in until the middle of December. Nobody seems to be very concerned about this but the more reading I do the more concerned I get.

I also can’t wear my contacts right now. They’re very uncomfortable.