Interferon Alfa

[Dazakella2010]

Hi all

Can anyone tell me if you have had problems with this medication affecting your eyesight.

I can’t actually pin point when it started to happen. I started on this medication in November 2019.... coincidently I had an eye test in November. Then in December noticed my left eye was blurry through my new lease. Went back to the Optitions who thought the options had tested my eyes wrong and re tested my eyes and my left eye had in fact slightly increased in prescription. Four weeks later I noticed that my left eye seemed to get blurry again but in the mean time I was admitted to hospital late February 2020 and diagnosed with intercranial hypertension. I was in hospital for nearly 2 weeks and had a full eye examination done at a eye hospital which all seemed fine but my eye sight seems to now be blurry in both eyes and I feel that I need a prescription increase again. Any advise or experience would really be appreciated. X

[Inca]

I have problems with my left eye blurring . It is a cataract evidently which has appeared since I started to take Jakafi.Both my eyes water and blur a lot now,very frustrating and upsetting as I am sculptor ,need good vision....

Had Hydrea 11 yrs ,the Jakafi 18 months,I do hope you get your problems sorted out sure the Meds don't help.I had my last test new lenses last Nov in UK,then as blurring started I had another in March in France,where cataract and high pressure in eyes was found....now I need different lenses again as soon as cataract is removed........delayed by Covid .I hope you soon get your problems sorted...so many unwanted side effects from the Meds that keep us alive !!!!Very best to you.

[Superwoman]

Same here, been on Hydroxycarbamide for seven years started getting blurred vision around three years ago, each eye test was fine, just a slight increase in prescription, but last year It was found I had the start of glaucoma so had laser treatment which really helped, then they found I would need my cataracts done in both eyes, then earlier this year I felt really unwell with what I thought was the cold that just kept on giving, and my eyes became so painful and bloodshot that I had to attend my local eye clinic, where they told me that the gel was coming away from the retina, but my Haematologist felt that I might of had Covid 19 But will never know unless tested.

But the blurred vision was an absolute nightmare, kept on having to clean my glasses as I thought they we’re smeared, when I questioned my Haemo about it seemed to think that Hydroxycarbamide had nothing to do with it.

When I asked at the London Forum last year, there was quite a few people put up their hands, so not really sure if it’s the medication mine being different from yours.

What I do now is bathe my eyes morning and night with cooled boiled water and use Thealoz eye drops used for dry eyes, this has helped immensely.

Jean

[PhilReade]

Hi Dazakella

I’m on hydroxycarbamide 1500 mg daily I had my splenectomy in 2014 since then I’ve had blurred vision intermittently

Recently I’ve had real bad double vision and near passing out

I was at Warrington hospital yesterday for CT head scan and Doppler test and await results

But they sent me to Manchester eye hospital in 2017 and everything looked ok yet I’m still getting these episodes which worries me.

[Vicki_02]

I definitely had some issues when I started taking interferon and my lens prescription changed, since then I’ve been ok though. I do find that I can’t wear my lenses for as long and definitely have more days wearing my glasses. Occasionally I can find my vision to be a bit blurry the day after I’ve done my injection but generally I’m ok now.

Hope this helps and that it all settles down soon.

[lynxfluff]

Yikes - I’m sorry you ended up in the hospital, but glad it was before COVID really picked up hard.

That’s weird though... I was misdiagnosed with IIH/pseudotumor cerebri *first* back in 2011. I’d had a 35-day headache (I know, stupid to wait, but I was in my early 20s in the US with no money for out of pocket maximums). Did the whole MRI/X-ray bit to rule out actual tumors; never did a basic CBC. Did a spinal tap, but my opening pressure was within normal range. But it was their best guess still. My optic nerves showed the pressure striating that can be associated with IIH, and I experienced a decrease in peripheral vision.

In 2017, I found out it was actually PV. Now that my bloods are in the right ranges, I no longer experience the headaches. My vision has also gone back to 20/20, with no more striations.

Does the dose of interferon you’re on keep your bloods in check? HCT, RBC, WBC, *and platelets? (For ref, all mine were high when it mimicked IIH.) In February, you were still kind-of early in the interferon game; I wonder if this will chill out as your body adjusts and numbers go down.

[zvinkovic]

Hi,

My eyesight in one eye decreased when I first started interferon back in 2004 at age 24, eye doctor could not find any reason so we agreed it is probably from interferon as it lists eye problems as one of sideefects. I also had pain behind that eye, probably in optical nerve and as sideefects also list neuropathy she said that was probably it. She recommended glasses and to try and take a break from interferon which I did and when I started again it didn't cause same issues and my vision went back to normal.

Last October I switched to Pegasys and since then if I don't get enough sleep, vision in that eye sometimes gets blurry and I use glasses I got when I first had vision problems and after day or two vision gets back to normal. Pretty weird, but I'm glad I don't have to wear glasses all the time. 🤓

[Jawas]

Hi Dazakella,

I had problems when my interferon dose was too high. ET Calr+ve

High blood presure,muscle tension/pain and eye prescription changing all the time.

I had a break for over a year with platelets OK, then started interferon again at a lower dose which is working so far.

So you could try talking to your haem about lowering the dose.

Good luck

Jawas