red eye /conjunctivitis and essential thrombocythemia

[Lochbroom]

Hello everyone

I'm wondering if there may be a connection between chronic conjunctivitis and essential thrombocythemia. I am in my seventies and was diagnosed over three years ago after mild TIA stroke. The only symptoms prior to diagnosis were recurring bouts of conjunctivitis and an episode of inflamed toes that lasted about three weeks and have, so far, never recurred.

I take 500mg Hydrea , 75mg Clopidogrel and 10mg Ezétimibe daily which keep my platelets in the normal range and cholesterol levels low.

I am currently struggling with red eyes and conjunctivitis again. Might this be caused by inflammation inherent in ET? I eat a Mediterranean diet, drinks lots of water and walk my 10,000 steps every day. Any thoughts?

Best wishes to all

Caroline (Lochbroom )

[Hbm1]

Hi Caroline

I too am in my 70s, have ET and take 500 Hydrea daily. My platelets are under control but I continue to suffer from extremely dry eyes (not conjunctivitis ) and tingling, burning feet. After many consultations and a lot of research it appears that I have Vitamin B12 deficiency. My blood test for B12 was shown as normal but at the low end of the scale. Further research suggests that chronic conjunctivitis may be linked to B12 and also Folic Acid deficiency.

Ten days ago I discussed my problem with my GP and he immediately suggested I have a B12 injection. Not only did he agree that my level was on the low side of normal he agreed that certain medications can interfere with absorption of B12. Hydroxycarbamide is on the list, as are proton pump inhibitors.

It’s early days for me but since the injection my life has been transformed. So many previously unaccountable symptoms have disappeared. I actually feel well again, something I’ve not felt for many months now. The rapid improvement has been almost miraculous.

My eyes are just starting to show signs of improvement and I’m keeping fingers crossed that the improvement will continue. I can apparently have the injections on a regular basis.

It’s definitely worth pursuing the vitamin deficiency route. Deficiencies are often missed by Doctors. I’d had a in-depth eye examination which had shown nothing sinister, also a Neurological consultation at which I was more or less told ‘it was my age’!

I do hope this is helpful. Best wishes and let us know how you get on.

Helen

[Lochbroom in reply to Hbm1]

Thank you Helen for your very helpful reply. I have an appointment with my haematologist in ten days time and will discuss this with him. I'll also contact my GP and get a blood test for Vitamin B12 deficiency asap. Will keep you posted.

Best wishes,

Caroline

[Swede]

Hi, funny you should mention that...I ever so often get that and so far I have not been able to find the actual culprit...so I guess more investigations is needed (I need a diary)

[ALlady]

yes, I have PV and also have dry eyes which caused redness and conjunctivitis. My ophthalmologist says there is a connection.

Getting my blood counts in line and using Xiidra for my eyes daily has helped and I no longer look in the mirror.to see a red eyed bunny looking back.

I have a profile, activity level and diet much like yours.

[Lochbroom in reply to ALlady]

I've been using Thealose and gentle massage around my eyes as prescribed by my opthamologist. Also Indocollyre drops for the inflammation. I'm having my blood test next week and will also look into other eye treatments. Thanks for your response. It is interesting how many of us share similar symptoms

[Auggie17]

Hi- I also have dry eyes and conjunctivitis periodically. Never did I connect it with hydrea. I take Plavix, and atorvastatin as well. I am also on amlodipine, furosemide and fibercon. All needed for side effects of medicine/disease. Inflammation is my biggest problem I feel but would be curious if I need B12. Good luck and keep us updated as I will too.

[Lochbroom]

I'm not sure there is a connection between Hydrea and dry eyes/conjunctivtis. As you say inflammation whatever the cause seems to be the main problem. I'm seeing my GP, opthamologist and hematologist in the next few weeks and will continue investigating. Thank you for replying. More anon.....