Hydroxycarbamide & eye problems

[Digger031145]

Has anyone here had problems arise with their vision after taking HU for a long time.??

I’ve got field vision loss …, been in HU over 10 years. My neuro ophthalmologist has said that Hu is known to cause problems with oeripha field vision.

I now also have peripheral neuropathy - another known side effect !!

[hunter5582]

While I did not I have visual issues with HU, I did have significant adverse effects that make me intolerant of it. HU is a med that can have long-term adverse effects. It sounds like you are making an excellent case for consideration in changing meds.

Wishing you success moving forward.

[Bluetop]

i have been on hydroxy for about 8 years and I also have some peripheral neuropathy issues. However, i just had an eye test last week and no mention was made of field vision. I'm not aware of a problem but will ask! My vision in general seems to be changing quite quickly and I did wonder if hydroxy might be a contributor. Has there been a suggestion that it is time for you to switch from hydroxy? (though not a good time with Ropeginterferon being in short supply.)

[Digger031145 in reply to Bluetop]

Nothing had bed said yet about me switching from Hydroxycarbamide but the haematologist hasn’t yet seen the letter my neuro ophthalmology consultant where he stated it

[Jamesxyz]

Hi,

I guess all these meds can have side effects some quite serious.

Where did you have neuropathy?

Thanks

[Digger031145 in reply to Jamesxyz]

I’ve got neuropathy in my feet lower legs arms and hands

[Isabella1854]

I’ve been on HU for 2 years and have had absolutely no side effects at all. I already had macular degeneration in one eye and another degenerative condition in the other so it is difficult to say whether HU is affecting me. My ophthalmologist advised that there has been no further degeneration in the last 12 months so 🤞🤞

[Digger031145 in reply to Isabella1854]

My neuro ophthalmologist Susie to it IS the Hydroxycarbamide and had written to me saying this so I’ve passed it on to my haematologist

[Mu55]

I’ve had intermittent blurred vision for years with hydroxycarbamide but my Haematolygist didn’t think it was linked

I find it difficult to focus on faces it’s really worrying it was that bad 18 months back I attended A&E they did scans and tests but didn’t come up with anything they put it down to migraines

[Digger031145 in reply to Mu55]

My neuro ophthalmologist suspects it IS the Hydroxycarbamide and he’s put it in a letter to me which I’ve sent to my haematologist

[Mirror368]

This is a very interesting issue. My eyes are very dry but nothing else so far. Have you been taking a high dose of HU?

Best wishes, Eileen

[Clupea]

I had cataracts before taking hyroxycarbamide. Just had eye test and eyes are stable despite over a year of hydroxyxarbamide.