Vision Issues and Hydrox: I started taking Hydrox... - MPN Voice

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Vision Issues and Hydrox

MDI55 profile image
14 Replies

I started taking Hydrox and noticed my vision getting worse by the day. My doctor said there is no connection between the drug and that interaction but the Mayo web site talks about studies on that. I was on vacation last week and stopped taking my meds and sure enough my vision cleared 100% . Has anyone else had vision issues on the meds?

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MDI55 profile image
MDI55
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14 Replies
EPguy profile image
EPguy

Vision troubles is not well known with HU, but your experience is convincing.

You note med(s) Is there another med you also paused on your trip?

Do you have a link to the Mayo studies? It sounds worth digging into.

Vision is a rare but important adverse effect with INF, I've had some eye minor effects on it. (Besremi)

Cookiebaker profile image
Cookiebaker

I complain all the time about blurry vision . My eye doc said it is from dry eyes . I use drops but doesn’t seem to help . Interesting to know others have issues too . I have taken Hydroxyurea for 3 years. I first noticed the vision problem before I started the Hydroxyurea so I thought it was from my platelets and not the drug .

hunter5582 profile image
hunter5582 in reply to Cookiebaker

That does sound more like dry eye than the kind if vision problems MPN cause. Dry eye is very easy for the doc to detect. It tried the artificial tears, Restasis, and Xiidra before finally finding something that worked - Cequa. Suggest going back to the eye doc to try something else.

Cookiebaker profile image
Cookiebaker in reply to hunter5582

Thank you Hunter, Next time I see the eye doctor I will ask him about a different drop .

Water111 profile image
Water111 in reply to hunter5582

I use Systane ultra for dry eyes you can buy it over the counter. Drug Class: Artificial Tears and Lubricant Combinations

MDI55 profile image
MDI55 in reply to hunter5582

I thought so too but none of the dry eye meds helped and I wen to an eye doctor who said I did not have dry eye…there is a study being done by the FDA right now about the connection of HU to vision issues . I might be just might be one the lucky ones.

hunter5582 profile image
hunter5582 in reply to MDI55

Sounds like that might be the case. I was also HU-intolerant but with different adverse effects. Hope you get it all sorted ASAP.

Windy51 profile image
Windy51 in reply to Cookiebaker

Hi yes I think the same I feel my vision has got worse since I’ve been on Hydrea for two years

hunter5582 profile image
hunter5582

That is not an adverse effect I have heard of but it sounds like you found a reference. The timing and remission of the problem seems pretty convincing that it could be a rare adverse effect. It is a good thing that you do have other options for cytoreduction.

azaelea profile image
azaelea

I’ve been on Hydroxy for four years and my eyesight has definitely deteriorated gradually since beginning it. It could be because of age and also advancing cataract but I have thought for some time it’s caused by the Hydroxy.

Winchie profile image
Winchie

My vision got blurry a few times right before I went on hydroxy. I’ve only been on it six weeks but my eyes were fine as soon as I went on the pill

MDI55 profile image
MDI55

Thanks for all the reply's. I have done my own experiment and went off ALL meds ( I do not take many) for 10 days and after days 2 my vision cleared 100%. I slowly went back a pill a time staring with my blood pressure and no issues, than the baby aspirin and no issues, I have dry macular I take eye vitamins for and started back and no issues. My vision is great again. Today I will start back on my HU and see what happens but my vision change has been pretty drastic since stopping. I was getting to the point where I was even worried about driving as everything on the road was so blurry. I couldn’t even make out peoples faces as it was almost double vision. I will let everyone know the results over this week.

EPguy profile image
EPguy in reply to MDI55

That's a good experiment. When your vision went bad, how long after starting HU did that occur? If you get a similar period it would seem even more convincing. The clinicians should find your experiment worth attention, including the studies you note at Mayo.

Do you have more info on those studies?

With my eye issues on Besremi, I've actually had apparent vision improvements since starting. This seems also unusual.

Pte82 profile image
Pte82

Your gradual vision loss may be connected to Hydrea's causing loss of magnesium needed to activate thiamine. Activated thiamine is needed by the brain, vagus nerve and gut for proper digestion to allow absorption of vitamins. It's also needed to activate B6. MD155, in the sciencedaily link benfotiamine is a man made form of thiamine with benefits for vision.

healthline.com/nutrition/ey...

sciencedaily.com/releases/2...

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