eyesight problems

[Grendall]

hi all,

I hope you are all keeping well.

Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself…

I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA

[EPguy]

Both ET and IFN can cause vision issues, but IFN is higher risk of having permanent effect.

What is your vast change? Is it only since starting IFN? "Vast" is a worry some word for any medical condition and retina damage is a known rare IFN event.

From Besremi: "BESREMi can cause severe eye problems with your retinas that can lead to vision loss or blindness. "

I have suffered permanent serious immune injury related to IFN, so my point of view tends toward alarmist for the rare complications and this may be overkill.

With the limited info, my take is to see an eye Dr ASAP and maybe hold the IFN till you do. Stopping IFN immediately is critical if a serious related adverse is happening. (My mistake was taking that last dose when the warnings were there) .

Note that your blood counts should hold for a while when stopped so ask your Dr. Mine held for three months.

I see your prior post "I felt that sick I initially laid on the bathroom floor for a few minutes until I came around" I passed out after my fateful last dose, and hit my head.

It seems you are getting various warnings and should consider consult with a Rheumatologist for any brewing autoimmune condition in addition to the Eye Dr.

[Ggrana3192 in reply to EPguy]

yes my vision has changed since starting Besremi, I don’t see as well and cannot drive with my eyeglasses on anymore . I go for my eye exams and they tell me I pass exam that nothing has changed. I don’t get it

[EPguy in reply to Ggrana3192]

Based on that info, in my opinion you have an urgency as it's some sort of unusual eye effect. Your eye Dr says your retina looks ok, correct? Could be neurological if there's nothing eye Dr can find. IFN in particular can cause various rare but permanent damage, more so than our other meds. So prompt attention is essential for things not in the usual/common adverse IFN list.

[ainslie]

it’s probably wise to discuss with Haem and eye doc asap, also agree with Haem if considering stopping Inf. EP guy said his counts stayed good for months after stopping, that may not be the case with you, again one for yo to discuss with Haem. Action and persistence is probably wise.

[MoNut]

it says on the list of side effects that it can affect the eyesight. My Haematologist has advised me to visit my eye hospital.

[Elizka]

I feel like night driving is harder or that I can't see as well long distance, but at check up I'm told nothing has changed.