Vision Problems

[BluePeony]

Does anyone know what, physiology, causes visual disturbances with PV? The bluriness comes and goes, but it is quite intense at times. I wear corrective lenses. I can’t imagine a change in prescription could help since it is so variable.

[Cookiebaker]

I have blurred vision that comes and goes also very intense at times . I have ET. I also wonder if there is anything I can do for it .

[BluePeony in reply to Cookiebaker]

Thanks Cookiebaker ~ just made some chunky cookies myself! I see my doc in a week and a half. I plan to ask her about the vision issues. I will post back here if she can shed any light on the problem. Best ~

[Cookiebaker in reply to BluePeony]

I will be on the lookout for your posting about our vision problem. Thank you. Enjoy your cookies 😊

[clubdino]

I would imagine it has to deal with the small vessels of the eyes being clogged with blood cells. My blurry vision comes and goes.

[BluePeony in reply to clubdino]

Hmmm...wondering if the stress on the small blood vessels eventually causes damage? Thanks, clubdino.

[MCW22]

I'm in exactly the same boat. PV and intermittent blurriness. It was my first symptom before I knew I had PV so naturally went for an eye test but there was very little change from the 2 years previous. Hospital checked my eye health and found nothing. So just have to put up with it. Frustrating when it's so bad at times that I can't even read.

Carol.

[Stevesmum42 in reply to MCW22]

Hi I am the same , I really want to read more but it's very difficult as sometimes there is just a blur on the page, then I squint to see if it makes any difference but it doesn't . I have regular retinopathy checks as also am diabetic , but the eyes are clear (thank goodness) but they are not clear from my side!!!

Just anotheR side affect .

Best wishes all Sandy

[BluePeony in reply to Stevesmum42]

The inability to read is the worst part of it for me, although driving is a huge issue as well. Thanks, Sandy.

[BluePeony in reply to MCW22]

Come to think of it, I was also having “the blurs” prior to diagnosis 5 months ago. Thank you Carol.

[clubdino]

Makes me wonder if taking 325 mg of aspirin would help the blurriness since it thins the blood. I'll have to try it next time it happens to me.

[BluePeony in reply to clubdino]

Would that dose tend to impact your belly clubdino?

[clubdino in reply to BluePeony]

That is the normal dose someone takes for a headache. I wouldn't take it everyday...just when my vision got blurry. Although someone here just said they are already on blood thinners and it doesn't help their blurry vision so my theory just went out the window. 😄 A couple years ago I had a scary point when my blurry vision stayed for a couple weeks straight and I did see an eye doctor and they couldn't find anything wrong.

You made a good point though and I hope there isn't any long term damage from our blood vessels in our eyes being constantly clogged with cells.

[Inca]

I have the same problem,as a sculptor ,my work requiring fine detail,this makes some days impossible,other days are not so difficult,have eyes tested every year,,it drives me 'crackers'.9 yrs now PV,just changed to Rux after H U stopped controlling my counts.

On blood thinners,.......just a problem we must cope with I think.

[BluePeony in reply to Inca]

Thank you Inca. Can’t imagine how frustrating that must be for an artist. I wonder if the Rux will help that and other symptoms more than HU?

[Bridie123]

Same with ET

[SuET2017]

Hi there, I have ET, not PV, but I do get vision problems - random blurring that can be quite intense sometimes and the length of times it lasts is variable - 10 mins to a couple of days.

I have read up about this and it would seem, basically, that this happens when the bone marrow is over producing and the platelets are flooding the system, which effects the capillaries in the eyes.

I wear glasses for reading and have tried contact lenses without success as when I get the blurring the contact lenses feel awkward and it seems more difficult to refocus.

Generally I just sit it out. And in fact I have it at the moment and it can be really tiring, I’m guessing due to the strain of trying to refocus all the time. Fortunately I don’t generally get headaches/migraines from it, which I read is possible.

Sue

[BluePeony in reply to SuET2017]

Great explanation regarding the platelets, Sue. My research failed me on this topic. My labs are stable right now, but I guess our bone marrow is overactive regardless. Maybe I will learn a bit of patience from this disease. Thanks for the reply.

[Cja1956]

I have PV also and lately my vision is also getting worse. I’m going to make an appointment with an eye doctor to see what’s wrong. It may be related to my PV or I just may need new glasses. Either way, it’s best to find out. Good luck.

Cindy

[BluePeony in reply to Cja1956]

Good luck to you as well, Cindy. I guess keeping updated with the eye doc is what I need to do as well.