Blurry Vision Issues

[MDI55]

I know I am 67 now and changes happen but I had never had a problem with my long vision until I started taking Hydrox. Has anyone experienced vision changes from the drug or the ET. It gets better and worse day by day and it can get almost like double vision at times and than clear up?

[Cat1001954]

hi I’m cat I’m 69 and iv started having blurry vision also I’m having eye test on Monday for new glasses I’m not sure if symptom or side effect of drug

[Swede]

Hi, funny you should mention this. I had my eyes tested two weeks ago, although it was only,1,5 years since last time.I also have periods of blurry eye sight and it comes and goes. The optometrist said that she did not know if the MF, medication or anything else had something to do with it . I know for sure that if I spend some time on the mobile, reading, it takes longer to adjust my eyes to distance but she said that is perfectly normal. After all the photoes and checks, she said my eyes look ok.

[Rem31]

Dry eyes can affect focus and cause blurriness. What you describe sounds similar to my experience and I was referred to an ophthalmologist by a GP who thought my problem was cataracts. Turned out the source of the problem was lack of meibum which is a naturally produced oily substance that helps stop the eye tear film from drying out.

I was told it’s just one of those niggles that happens as we get older and it isn’t unusual. There are remedies.

[Daisy-May]

I'm 68 I take Hydrox Monday to Thursday I get blurry vision when my HCT is high

[Ratton]

I have dry eyes and have to use eye drops 3 times day-have slow cataracts.Also have ET take Anagrelide for lowering platelets and aspirin to thin out blood.

Foggy eyes and blurry vision -Had this before diagnosis but has just seemed worse as have gotten older. Had 2 eye checks this year and also have floaters in my eyes- which are a nuisance but have to get used to them.Optometrist says all I need is slight adjustment to prescription of glasses!

[Orangeboykitty]

I think blurry vision is an MPN symptom, not necessarily a side effect of medication. I've had it on and off while on different meds and even before I began using meds.

[Oscarsboy]

Yes I too have it on and off and also have drops for dry eyes.

[Fremia7]

sorry to hear of your issues. I used to get a lot of ocular migraines, and floaters in my vision. I find a daily aspirin 0.75mg helped get rid of these. Good luck

[rcan_sMF]

I have experienced this in my right eye for about a year. I transitioned to Jakafi (Ruxolitinib) however about two years ago from Hydroxyurea. I don’t know if this is attributable to my dx of PV, the medications’ effects, a combination of both or if it’s a completely separate issue.

I would suggest a thorough exam performed by an ophthalmologist as age-related macular degeneration is not uncommon at our age. Sorry that I cannot be more helpful.

[Minu68]

Hi, I had my eyes tested and I get watery eyes, struggle to focus at times and my vision also can go double. Part of the reason I got them checked by an optician before seeing my doctor is because I too felt it might be to do with taking Hydroxy. I really struggle when I am tired, and getting fatigue as part of my ET symptoms doesn't help. I got to the pint of having to rest my eyes after 2-3 hours every day, and feel unsafe to drive because of the double vision that happens.

The optician was thorough, and is of the view that the issues with my eyes are not related to the Hydroxy. He thinks that the fatigue that can happen to some people as a side effect of Hydroxy has exacerbated the issue. It turns out that my 'up & down' eye muscles don't coordinate completely. It's likely an issue I've had all my life, but as I have gotten older my eyes and brain are less able to compensate for it. The fatigue caused by my ET, and then the Hydroxy too, have made it more apparent and frequent, with my eyes unable to compensate/adjust for the difference like they used to. I've had watery eyes for some years, and he thinks this is a part of the same issue. Apparently for the 'side to side' movement muscles in eyes there are exercises you can do to strengthen the muscles, but not for the 'up/down' ones.

I used to go to high street chain opticians, have told them about this issue at my last check 4 years ago, and the one before 6 years ago. So I've had this for some time, and it has progressively gotten worse, then really noticeably worse coinciding with starting Hydroxy. I even told them at the eye test a few months after starting Hydroxy just over 2 years ago. They didn't pick up on this. I tried dry eye treatments via the gp a fair few years ago, which made no difference to my watery eyes. I was unhappy about my last experience with the high street opticians chain, and never really got on with the glasses I got 2 years ago, so this time went to a recommended, higher end optician.

So please do see a reputable optician first. When I couldn't manage to focus the top line of letters at the test was literally below the next line under it!

So next week I am picking up my new prescription glasses, with a prism that will correct it. The optician thinks this will really improve my quality of life, which has definitely suffered because of this issue. I have to say, the prism he used during the eye test made such a difference - I suddenly didn't have to really focus, and it felt so much easier/effortless looking at the chart...

Obviously this might not be what you have, but as what you write relates well to what is going on with my eyes it could be. I've even followed and responded to previous posts about tired eyes on here in relation to MPNs and medication.

[Exeter21 in reply to Minu68]

Don’t feel you are tied to Hydroxy. I was lucky to experience experimenting the effects of hydroxy as had no symptoms before I took it. It does affect eyes as well as many other things on people. I came off it & onto Peg Interferon & my clear vision & health returned. We have choices of drugs don’t be forced to think you need to stay on Hydroxy . 👍

[Minu68 in reply to Exeter21]

I have some mental health issues that mean interferon is risky for me, but will discuss my issues again at next haematology appointment, thanks 🙏

[Blackroc]

I also suffer from blurred vision. I have JAK 2+ MPN - most likely PV, and also taking HU. At last test platelets were responding well. HCT was down somewhat but still high. I also have wet ARMD and lost central vision in one eye several years ago. The other eye is being injected for the past few years. I mentioned the blurred vision to my Opholmologist about three months ago. He did not think it was related to the PV and said there was no evidence of vein blockage. He thought it was due to having so many injections and suspended them for the present. I’m sceptical of this advice and think it’s related to sluggish blood, particularly as it’s worse in the morning. I also suffer from dry eyes, which I think is contributing.

I hope you get answers soon.

Judith

[Exeter21]

I am in u k I came off Hydroxy as it not only made me feel spaced out affecting vision like brain fog. It also gave me bad gastric problems drastic loss of weight & hair loss in my 6 weeks of trying to cope with it .

Awful drug for my body . I asked to change & now on Peg Interferon low dose & back to feeling fit & normal . 👍

[WYLDEMANSWOMAN]

50yof. PV w/JAK2. Hydroxyurea for 9 months (500mg/daily), continuing daily 500mg, with 2 days a week bumped up to 1000mg 2 months ago.

I have vision issues as well. Experience is similar to yours. Can have days that are no issues working the computer all day. There are days that I have to switch to higher strength readers to be able to continue. And then there are those days that my vision is so blurry it looks double. Those are the days that I stop working and go take a nap. "Usually" better the next day.

[GarciaB]

I too experience periods of changed visual acuity. I was prescribed Refresh eye drops, they helped. I was also told that my medications can cause vision changes. I agree with others, that reading phone screens and reading , then looking at a distance, I notice a slower adjustment . All in all, it’s still a minor concern compared to the larger picture

[dogsandhorses]

Yes, I have vision issues as well. I have a hard time focusing, especially when I am outside, and moving, like in a car. My eye exams haven't picked up anything to do with this though. I'm fairly sure it is still another bad side effect of this drug.

[Peter18]

A most interesting series of comments. Since diagnosis of PV in 2018 and prescription of hydroxy, I have experienced blurriness in my left eye, confirmed in my annual eye check-ups. The optician noted dry eyes and suggested eye-drops which I take as and when needed. Unsure as to whether this relates to the condition/medication or is simply part of ageing process (I am 69).

[Runner999]

I am a similar age with ET and on hydroxy + clopidogrel for a few years.

my sight is fine in a morning but gets blurry for detail as the day goes on - eg I cannot see a tennis match clearly on the TV by evening that I can see perfectly well earlier, or leaves on trees are individuals now but green blobs later in day.

I saw my optician and a consultant - both said I have 20;20 vision even in early evening - when I know I do not!

I had not thought to associate with ET / meds but will report at next check up!