Eye problems with Pegasys for ET

[Shopgirl10128]

I began Pegasys and immediately had severe dry eyes in the mornings. Three weeks into treatment my vision worsened. I saw a retina specialist and have been diagnosed with macula pucker. Has anyone experience eye problems while on this med?

[Spanelmad]

Have seen the optician recently because eyes have become very dry have been told to use drops 3 times a day.No macular degeneration at this time although have been given strict instructions to go back if it gets any worse.

[hunter5582]

I had not heard of Pegasys causing dry eye, but retinal toxicities are known to occur, including, retinal hemorrhage, retinal thrombosis, and vision loss. I am monitored closely for Besremi visual adverse effects which include retinopathy, retinal hemorrhage, retinal detachment, retinal vascular occlusion, cataracts, vision loss. This risk is not something I take lightly given my history of retinal tears and posterior vitreous detachment.

As a side note, I do also have significant dry eye predating the IFNs. I asm using Cequa eye drops, which are the only eye drops that worked for me. My son, who also has dry eye, just had punctal plugs inserted.

Wishing you success in getting the ocular/retinal issues addressed.

[EPguy]

In my opinion you're getting good warnings that a serious hazard is under way. Retinal injury is among the more severe outcomes esp that quickly. Instant "severe" dry eye is not normal either. From the other IFN, Besremi, label:

"Discontinue BESREMi in patients who develop new or worsening eye disorder"

As one who suffered a worst case IFN outcome I'm sensitive to the warnings.

Please discuss asap with your hematologist or other trusted expert, and from my experience and my opinion only, hold off the IFN till you have that talk.

[Shopgirl10128 in reply to EPguy]

I read your long and detailed account recently. Excellent! I did discontinue treatment after five low doses of Pegasys. However early morning today my daughter noticed my left eye drooping and corner of my lip as well. Then I realized my facial nerve was slightly numb. I went to a university ER and they did a lot of tests. Waiting for an MRI. Could be Bell’s palsy from a virus, TIA. I think the MRI might give us some answers. I am a retired pediatric dentist and was always very healthy and on a plant based diet. Athletic. Wished I had never agreed to start Pegasys. Thx for your comments and thoughtful posts.

[EPguy in reply to Shopgirl10128]

Having such troubles after careful low dosing is unfortunate. Low and slow is the idea on this forum to reduce that risk. Your experience is an example of the wide variations in how this otherwise excellent therapy works.

Both a virus and a vaccine can, rarely, trigger neuro troubles. Adding IFN can amp these up as I have demonstrated. A quick search shows a rare correlation of bells palsy to the Covid vax. But according to this report good odds of recovery:

"(Bell’s Palsy) is self-limiting in 71%–86% of cases"

journals.lww.com/prsgo/full...

I was on a path to a self limiting Brachial neuritis from the vax but that Last Dose kicked it over the fence.

[Shopgirl10128 in reply to EPguy]

neurologist says it appears to be the trigeminal nerve and all three branches. I have no pain just very mild numbness. I’ve been referred from the hospital out to a neurologist in the area. After a lot of googling I wonder if this was the early beginnings of Sjögrens.

[EPguy in reply to Shopgirl10128]

Sjo can start with neuro troubles, as mine did. But Neuro can also end there with no Sjo involved. Did you have any illness or vaccine near when you started PEG?

Facial nerves are indeed a Sjo aspect, I have a mild version of that, comes and goes as is typical for Sjo. But my neuro started in the shoulder.

[AndyT]

I had a scare a few years ago when my vision seemed to worsen after a couple of years on Pegasys.

After thorough investigation by an ophthalmologist they could find no link and in time it resolved itself, so it seems that it wasn’t a side effect of Peg.

I’ve worn glasses for 50 years and my prescription is little different now to what it was before starting Pegasys.

[EPguy in reply to AndyT]

To AndyT:

Despite my severe outcome, my eyesight improved on IFN, close to 20/20 and it's holding. It's not a documented benefit, but maybe your steady eye Rx is similar. Strange. For the OP the very quick onset of severe events are worrisome.