PV Jak2 positive d/x in 2004. Regular venous sections for approx 7 yrs then veins did a Houdini act so was put on Hydroxy and we’ve been daily companions ever since.
I experience extreme fatigue….asleep by 9pm and awake at 7am so 10hrs is my norm….I’m really not good fun at parties. Latest stuff going on: seems I have a couple of hitchhikers in the guise of cysts on my liver and my right kidney but deemed non suspicious and best left alone. But the one that’s really getting on my nerves is the blurry vision. Not all the time….I can see fine to type this but it comes and goes throughout the day. Had glasses sorted but still happening. I’m aware that a side effect of regular chemo is blurry vision. Anyone else experiencing same and is it the PV or the Hydroxy? Tia x
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Polly-PV
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I have not heard of hydroxy causing blurred vision. The PV can do that by causing visual or ocular migraines. What form of blurred vision are you experiencing, scotoma, diplopia, scintillation, or something else? Is is a steady state of blurred vision or is it episoding. Do you have any episodes of migraine aura? There are other ways PV might affect you.
Suggest that you seek consultation with a MPN Specialist and an ophthalmologist. You may also need to consult a neuro-ophthalmologist depending on what is going on. A new loss of vision should be considered an emergent condition that requires prompt attention.
Wishing you success in getting to the cause of the problem and resolving it.
Wow, occular migraines from the disease. I had no idea. Occasionally, my vision is blurred for a few minutes. Now I've started seeing black wavy lines sometimes when I get up at night and once when I had been doing my taxes and staring at my laptop all day. It is as if someone took a fine tip marker and drew curvy lines on my eyes. When I close my eyes the lines are white. I suspected they were occular migraines from stress, but had no idea they could be from the ET. This has me worried. I see a hemotologist / cancer specialist for my ET. I don't think he would know what caused the lines. How can I find an MPN specialist in my area? I am in the US in northeastern Connecticut, 2 hours from Boston and 1 hour from Hartford.
There are two times of migraines that can be related to MPNs. Visual migraines affect both eyes and are neurologically based. Ocular migrates (AKA retinal migraines) affect one eye and are based in the eye itself. Migraines can include aura, scintillation, scotoma, diplopia, blurred vision, and palinopsia (illusory or hallucinatory images). I have experienced all of these visual migraine phenomena. My visual migraines are acephalgic (painless). My migraines are neurologically based, the result of a brain surgery on my occipital lobe. Note that we can experience migraines for other reasons too.
What you desribing does sound like a visual migraine phenomena, but you need a proper evaluation to be sure. This would require assessment my an ophthalmologist, and possible a neurologist or neuro-ophthalmostat, You would also want to consult with a MPN Specialist as well. This kind of issue is beyond the scope of a regular hematologist.
Thanks Hunter, for your reply. If I really pinpoint the problem it’s double vision at a distance not close up. I can read easily but sometimes there’s a kind of overlap on objects far away. I’m due to see my new haem shortly so will bring it up then. I should add I have had retinal tears in the past and had them repaired by laser so maybe there’s a dryness at play too, as Meatloaf experiences.
I expect you will also need to consult with an ophthalmologist on this issue. Diplopia can occur in different forms and for different reasons. Diplopia can be either monocular or binocular. It can be due to an ocular issue, based in the cornea - lens - retina. It can be based in the optic nerve or in the brain. There can be ocular, neurologic or hematologic triggers for the problem. I expect there will be multiple trips to various doctors in the future. Note that I experience both monocular and binocular diplopia. The monocular diplopia is due to ocular issues. The binocular diplopia is the result of a brain surgery that caused convergence insufficiency. To deal with this, I see four doctors, neurologist, ophthalmologist, retina specialist, and neuro-ophthalmologist. It is like a big "ologist" party.
Hi Polly. I've been on hydroxy for almost 2 years and have similar vision issues. I am seeing an ophthalmologist next week. I did see a neuro-ophthalmologist a year ago and there was nothing conclusive. Also, I'm 76 so not sure what impact age might be having. I find my vision worsens as I get more tired during the day and is best in the am. Wishing you the best with your issues.
I saw the ophthalmologist yesterday. Had a full exam with all the tests and she determined that my eyes haven't deteriorated and no need to change anything. My cataract hasn't even changed. Nevertheless, I do occasionally have blurred vision, trouble focusing, and clearly tired eyes by the end of the day. So, basically no help whatsoever. Ditto for the neuro ophthalmologist I saw last year.
I'm on 1000mg/day of HU and over 3 years on the PV journey. I'm going to live with it and hope it doesn't get worse. At 76, I'm sure age is a contributing factor. Good luck with your quest.
Hi, I also have intermittent blurry vision, PV on HU. My mpn specialist said since counts well controlled with HU not likely the PV or HU. I have not seen an ophthalmologist for over 3 years, mine retired, my mpn doc recommended to start with checking with one. Could be dry eyes which happens as we age and I am also type 2 DM which is also well controlled with a normal A1C. I will have eye exam as soon as I find one who I think I can trust. I don't think the blurry vision comes and goes with cataracts but not positive. Best to you, let us know if you find a reason for the blurry vision.
My cataracts didn't seem like blurry vision to me. I didn't realize the difference until I had one eye done 6 months ago. The main thing I noticed was that colors were stronger. The sky had more blue and less gray for example. That was because I no longer had the yellow film over my eye.
Dry eyes is the cause of my intermittent blurry vision, per my ophthalmologist who recommended preservative free artificial tears. Hydroxyurea may be a contributing factor due to its cutaneous drying effects.
I take hydroxy. My vision has changed twice since I began hydroxy, coincidentally. I am 76. Had the JAK2 transition a couple of years back. VA sends me eye drop fluid periodically, which seems to result in clearer vision. However, if I read a lot, or write, or watch TV, the dryness emerges more quickly---dry air no good. I accept it and move on....maybe I should not just accept it?
Hi, I have ET with diagnosis in 2010. Been on HU since 2011. Jax2 positive. I have the fatigue and the cysts. The two in my liver have filled with calcium. HU and the disease can both cause fatigue so it is a double wammy. I've had the blurred vision 4-5 times in the last few years. It only last a minute or too. I wonder if it is caused by a momentary clot. Also, occasionally my night vision is affected in one eye so that I see much less light out of that eye for 5-10 minutes. Lately when I get up during the night I occasionally see wavy black lines in front of my eyes. When I close my eyes, I see the same lines in white. It is very wierd.
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