Has anyone on Pegasus interferon had eye retina problems?

[Na56]

Well that’s my question. I keep wondering if Pegasus interferon would be a better medication for me rather than 9 hydroxycarbemide tablets per week for ET but now I’m worried about possible eye problems. Has anyone had retina problems on this drug? When a MPN specialist advises about interferon do they talk about this possible side effect. Thank you Irene

[Hopetohelp]

No one has ever mentioned problems with eyes. It’s listed as a possible side effect though. I get mine checked regularly at the opticians and all has been ok so far , touch wood

[Na56 in reply to Hopetohelp]

I’ll get mine checked too. Thanks for replying. Irene

[hunter5582]

Pegasys comes with a risk of vision loss, retinal hemorrhage, retinal thrombosis. Most people, of course, do not experience visual adverse effects. I have had no issues with Pegasys/Besremi after 2 years. In fact, the IFNs have been much easier to tolerate and more effective than hydroxyurea for me. Note that we are all different in how we react to the meds used to treat MPNs.

You will have to compare the risks and actual effects of HU that you are currently experiencing and compare to the potential risks of PEG. Comparing the risks and benefits of each of your choices and how each drug aligns with your treatment goals and risk tolerance is the best way to make a decision for yourself.

Wishing you all the best.

[Looolooo in reply to hunter5582]

No eye issues on Peg for me either...

[Na56 in reply to hunter5582]

Thank you Hunter for your reply. I am going to make a list of all the pros and cons for the medications before discussing with my haematologist. Kind regards Irene

[monarch5000]

No eye issues after 7 years on Pegasys at 90 mcg per week. Had eye exam last week. Was told eyes were "very healthy".

[Na56 in reply to monarch5000]

Thank you. That’s good to hear. Any other side effects? I’m trying to work out the pros and cons of changing from hydroxycarbemide to Pegasus. Thanks Irene

[Na56 in reply to monarch5000]

Good to hear Thank you Irene

[monarch5000]

Important to start at a 30 - 45 mcg weekly dose during the first to let your body get used to the drug without bringing on unpleasant side effects like chills and malaise.

[Na56 in reply to monarch5000]

Thank you Irene

[AndyT]

I’ve been on Pegasys for 8 years and have had no eye problems from it. I did report some vision issues a few years ago but those were investigated and concluded there was no link to Pegasys, just age related.

[Na56 in reply to AndyT]

That’s good news. Thank you Irene

[gilded]

I’m on Pegasys interferon and when I notified the Consultant Ophthalmologist about this he did not say this would affect my eyesight.

[Na56 in reply to gilded]

Thank you Irene

[EPguy]

Retina troubles are in the list of rare but known risks with IFN as Hunter notes. My suggestion is get an exam from ophthalmologist before starting and regularly while on it. This is what I did.

Do you currently have any reason to suspect retinal trouble?

IFN has other very rare bad effects, with all these you do need to act quickly (stop the IFN and follow up) if any of them present (My experience is a reference)

[Na56 in reply to EPguy]

Hi I do have cysts on my retinas diagnosed about 12 years ago but they have never caused any problems. I used to have an annual check with an ophthalmologist but haven’t for a few years. I will book an appointment with him now to get a check. I hope that doesn’t stop me considering pegasys interferon.

Would you please remind me of what caused your problem with interferon and what to look out for.

I’m just trying to gather as much information as possible as although 9 hydroxycarbemide tablets for the last 18 months are now working nicely I don’t like my hair loss and the thought of skin cancer as I used to be a sun worshipper. Concerned that too much sun over the years plus now the chemo tablet might cause me skin cancer problems in the future. I’m 71.

Thank you Irene

[EPguy in reply to Na56]

Here is one of label sections for Besremi (PEG is similar) relating to eye issues:

"Ophthalmologic toxicity has occurred in patients receiving interferon alfa products, including BESREMi. These toxicities may include severe eye disorders such as retinopathy, retinal hemorrhage, retinal exudates, retinaldetachment and retinal artery or vein occlusion which may result in blindness. ...Advise patients to have eye examinations before and during BESREMi therapy, specifically in those patients with a retinopathy-associated disease such as diabetes mellitus or hypertension. Evaluate eye symptoms promptly. Discontinue BESREMi in patients who develop new or worsening eye disorders"

accessdata.fda.gov/drugsatf...

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For me Bes worked so well my Dr said my blood numbers looks like I don't have an MPN. But I suffered the very rare but severe autoimmune disease complication that IFN can cause. It was triggered by a flu vaccine. I now have untreatable Sjogren's syndrome. My worst decision was taking that last dose when weird symptoms had started. You can see this detailed history in my posts starting Nov 2022.

This is the black box label section of interest, black box is reserved for the most severe possibilities (HU also has one)

"Risk of Serious Disorders: Interferon alfa products may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Monitor closely and withdraw therapy with persistently severe or worsening signs or symptoms of the above disorders."

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You should look for any neurological conditions (numbness pain trembling etc) Some of these overlap with MPN symptoms but if it starts only after IFN starts it's of more interest. Same for dry mouth/eyes, new joint pains. Neuro and Rheumatological are all aggravatingly vague conditions. If an autoimmune is growing IFN needs to stop ASAP.

This is all quite rare but really bad. Usually all these are reversible if the IFN is stopped in time.

[Na56 in reply to EPguy]

Thank you so much for all this information. Kind regards Irene