Eye conditions: Has anyone had issues with runny... - CLL Support

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Eye conditions

33 Replies

Has anyone had issues with runny tearing eyes? I have tried OTC drops for dry eye, have been prescribed an antibiotic, which I used two repeats on the prescription and am now using prescribed antihistamine eye drops. Nothing seems to work.

I have had CLL for almost 16 years. At the six year point I took oral chemo and have lived a normal lifestyle. My counts have started to climb in small increments and was told I would probably start Imbruvica/imbrutinib (sp?) the next year.

Has anyone had this problem with teary eyes?

Thanks for any advice received. I follow this forum and do appreciate what i learn.

MJ (Fifty Seven)

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33 Replies
mrsjsmith profile image
mrsjsmith

Hi fiftyseven,

Yes sadly something suffered with pre diagnosis. Worth getting a referral to an eye consultant as mine was blocked tear ducts ! I used to feel so silly crying for no reason ! So I sympathise.

Good luck

Colette

in reply tomrsjsmith

Thanks Colette. I’m beginning to think it is blocked tear ducts too. Yes, I always need to have a Kleenex handy.

Thanks again for replying.

MJ

mrsjsmith profile image
mrsjsmith in reply to

Just annoy your family doctor some more and ask for a referral ! It’s a fairly simple test ! But just remember to check in a mirror before you leave ! Orange dye running down the cheeks is not an attractive look !

Colette

in reply tomrsjsmith

Will do and thanks for the tip about the orange dye.

Newdawn profile image
NewdawnAdministrator

Hi MJ,

I have a severe dry eye condition which ironically causes runny eyes at times. I found OTC drops and even prescribed antibiotics useless. My advice would be to consult a good Ophthalmic surgeon to have them checked out. I actually needed a course of supervised steroid drops for a while.

As Colette has said, sometimes malfunction tear ducts can cause this issue.

Best wishes,

Newdawn

in reply toNewdawn

Thank you New Dawn. I guess an ophthalmologist is my next step. My family doctor must hate to see me coming I’ve been to him so often about this.

Thanks again.

MJ

sometimes tearing is the eye trying to fight dry eye. Maybe a dry eye presscription drop like Restasis

Thank you for the suggestion. I hadn’t heard of Restasis.

MJ

Newdawn profile image
NewdawnAdministrator in reply to

Certainly in the U.K., Restasis is available only on prescription. It’s intended to increase tear production associated with severe dry eyes (however dry eyes can also create a tear problem). My opthalmic surgeon wouldn’t prescribe it for me as he said it can cause ‘issues’.

It’s something that would need to be discussed for your individual suitability Fiftyseven.

Make sure you keep your eyelids very clean and use warm compresses on them.

Best wishes,

Newdawn

willie11 profile image
willie11 in reply to

I believe restasis caused my CLL !!!!

eric72 profile image
eric72

I have had this trouble for some years. An ENT specialist suggested an operation. However, that is not a long term solution and only works for about a 6 months to a year at best. I declined. My CLL specialist has placed me on a permanent Antibiotic Doxycycline and that has been great. No eye or sinus infections for a year now. The only problem is sunlight I have to be extremely careful to use sun block etc..

in reply toeric72

Thanks Eric for your input. I hope your eye and sinus infections continue to stay clear.

MJ

mrsjsmith profile image
mrsjsmith

Morning Eric,

Sorry to disagree but after several nasty infections I couldn’t avoid the tear duct surgery called a DCR ! It is now a fairly simple operation done in day surgery, and 4 years on no more eye problems 🤞. My Opthamologist tells me to always put on sunglasses at the first sign of ☀️

Fiftyseven I hope yours will be sorted out quickly.

Regards

Colette

in reply tomrsjsmith

Thanks Colette, yes, me too. I will continue to finish the prescribed eye drops and the antihistamine pills then call the doctors office. My eyeglasses do change into sunglasses when out in the sun. Maybe I should wear the clip ons as well. I appreciate your help.

Thanks,

MJ

eric72 profile image
eric72 in reply tomrsjsmith

It was the ENT specialist who told me that it only last a short time. He then consulted with my CLL specialist and they came to the conclusion that long term Antibiotics were the answer. I am glad that your Eye problems are cured and do hope that your recovery continues. It was very nasty indeed in my case and at one point I had eye infections every two weeks.

mrsjsmith profile image
mrsjsmith in reply toeric72

Hi Eric,

Antibiotics didn’t work for me even Metronidazole. Slightly surprised you discussed this with ENT and not Opthamologist. My surgeon, who ran the tear duct clinic said 95% chance of it working first time. Perhaps I was lucky to have found a surgeon who lists lacrimal surgery as her speciality. Hope the antibiotics keep working for you.

Colette

eric72 profile image
eric72 in reply tomrsjsmith

I had sinus and eye infections at the same time. Hence my consultation with the ENT specialist. I had already seen an eye specialist sometime before and they were unable to solve the problem.

mrsjsmith profile image
mrsjsmith in reply toeric72

Morning Eric,

Ah that makes more sense. It’s seems so unfair after getting the CLL diagnosis we get these side effects. They can be so unpleasant and difficult to treat. I hope you are feeling better now, I am 🤞

Colette

RJR1 profile image
RJR1

My eyes watered so badly I often had to remove my glasses when trying to putt while playing golf. I had to keep tissue handy when driving. I used OTC eye drops, heat pads and eventually Restasis. Nothing helped. The ophthalmologist ruled out blocked tear ducts.

When I started on Imbruvica nearly 3 years ago and increased my water consumption to at least 3 quarts per day ...voila no more watery eyes. Today I find that if I’m not adequately hydrated they start watering again.

in reply toRJR1

Yes, I believe that. My glasses are usually not clean because of either drops of water from my eyes or I call it splashing. lol. That is interesting that drinking more water and the timing of the Imbruvica seemed to stop the watery eyes. We are only at the talking stage of going on Imbruvica for me so I have awhile to wait on that.

Thanks for your input RGR1. I appreciate it.

MJ

RJR1 profile image
RJR1 in reply to

I would probably still be dripping without having started Imbruvica for one simple reason... I really don’t like the taste of water.

in reply toRJR1

Thanks for your reply. I totally get it.

MJ

tozer profile image
tozer

Yes I have had this condition both on waking and at night when my eyes are tired. I have managed it by bathing in an eye solution called optrex and Changing my glasses to a stronger prescription. I try to avoid rubbing them. I am on ibrutinib and venetoclax for 2 years and am at mrd.

Best wishes

in reply totozer

I mostly have a problem all day, into the evening and worse if outside and if it is windy. Not so much in the morning until I get going. I do have an appt. with my optometrist in May.

Maybe I should see or call my nurse practitioner sooner rather than waiting until my next appt.

Thanks Tozer.

roszika profile image
roszika

I have dry eyes, had cataract op on both eyes 3 years ago, sometimes watery eyes, sometimes dry. At one stage so watery my eye specialist recommended a tear duct specialist but when I looked up the procedure to operate on tear ducts and that it was not always successful I agreed with my doctor who said-" can you live with the watery eyes" and rather than surgery which means stirring up the sinuses which I have lots of trouble with anyway, I decided I would live with the sporadic watery eyes. I have read that the the white cells often live in the eye area so cll can cause a lot of eye grief. It seems that eye problems and sinus problems affect a lot of us cll sufferers,

in reply toroszika

Thanks Roszika. All the responses i’ve received provided different situations with so much information. I’m not too sure about tear duct surgery either if it doesn’t work. My next CLL appt. is not for a couple of months so I will have lots of questions to take with me.

Wishing you and everyone who responded all the best.

MJ

mrsjsmith profile image
mrsjsmith in reply to

Where are you based ? My surgery was at St Thomas in London and I am so pleased I had it done !

Hope you find an answer.

Colette

I’m in Waterloo, Ontario

MJ

mrsjsmith profile image
mrsjsmith

Bit far for a hospital trip then ?

Colette 🤔

in reply tomrsjsmith

Colette,

Are you in the U.K.? I’m in Canada.

MJ

mrsjsmith profile image
mrsjsmith in reply to

That’s me ! From the U.K.

Colette

Porter01 profile image
Porter01

I have....my left eye has spells when it runs. I thought it was a clogged tear gland at first. No eye drops over the counter or prescription have helped. Antivirals seem to help some but it seems to come and go. I haven’t had it much since I was on Ibrutinib. Unfortunately I had to go off Ibrutinib due to serious side effects.

in reply toPorter01

Porter01, Sorry to hear you had to go off Ibrutinib but if it did give you some relief from the runny eye, that is good. I’m trying hot compresses the last couple of days. It helps for 2-3 hrs, but eventually starts up again.

Take care.

MJ

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