Anyone have eye issues associated with CLL?

[Tulear]

eye is inflamed, itchy and has excessive tearing. No treatment at this time. Ophthalmologist and specialist cannot figure it out. No blockage.

[dumbsaintmind]

if it’s only in one eye, I would suspect a reactivation of the herpes virus. In the eye, this can manifest as a number of things. For me, it manifests as “herpes keratitis”. This is due to my immune compromised condition as someone with CLL.

I would ask your eye doc about this. They may suggest prophylactic oral Valtrex, which is what I am on and am prescribed from both my eye doc and my CLL specialist.

Classically, herpes keratitis presents with a dendritic (tree-like) lesion which the eye doc should be able to see. Symptoms include redness, teary eye, pain, swelling, etc.

[lankisterguy Volunteer]

Hi Tulear,

We have had a few discussions about eye problems in the past, but most are about dry eyes and an autoimmune condition called Sjögren's syndrome. The doctors may need to sort out if there is a bacterial, viral or fungal cause to your problem, since we all have compromised immune systems from CLL, almost any odd disease is possible.

The related posts box on this page has one previous posting that may be worthwhile:

healthunlocked.com/cllsuppo...

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And the related posts on that page has these others listed:

Related Posts

*Eye problem - CLL /Ibrutinib healthunlocked.com/cllsuppo...

*Does CLL cause eye/cornea problems ? healthunlocked.com/cllsuppo...

*stubborn bacterial eye infection healthunlocked.com/cllsuppo...

*Eye conditions healthunlocked.com/cllsuppo...

*Sudden Right Eye Change in Vision, CLL on Ibrutinib for 14 Months healthunlocked.com/cllsuppo...

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Len

[Poodle2]

Have they checked your immunoglobulins? I had severe eye issues for months before I started treatment (it was like constant conjunctivitis - redness, itchy eyes, teary, constantly oozing, etc.) my immunologist said since my IgA was way below the threshold, it was definitely contributing to all the eye issues. I definitely didn't have any tearing, that sounds a bit scary, but I have been on prophylactic antibiotics since and also went through treatment in 2022-23. Hope you get to the bottom of it.

[CycleWonder in reply to Poodle2]

I had the same thing - the chronic conjunctivitis. At my last visit to the Opthamologist, it was gone. This was sux months after starting the IVIG monthly therapy.

[bennevisplace in reply to CycleWonder]

I have had conjunctivitis (classic symptoms to begin with) easing but not gone, despite taking antibiotic eye drops for 5 weeks. Was your experience in any way similar?

[Tulear in reply to bennevisplace]

This has been ongoing for over a year. I’ve been on steroid drops that help temporarily and can only be used for no more than two weeks. Sometimes it improves, but usually constant.

[bennevisplace in reply to CycleWonder]

The eye infection has been concurrent with a virus and post viral congestion.

[Murmeli]

Hi Tulear

Indeed I suffered from repeated eye infections, red eye etc. since about 20 years. It was almost every week something irritating. I could get rid of it with Voltaren eye drops (are not available anymore) and antibiotics eye drops and/or with extra care for eye lids (cleaning liquid). Sometimes worked with cortison cream on the eye lid if I was early enough. Most of the time it started with an eye lid eczema which infected my eye(s). I thought I had this because of my history of suffering from allergies (hay fever, nutritional allergies, eczema/sensitive skin), but in fact since my CLL was treated it has almost gone, I occasionally have red eyes, but more because of heavy wind outside. My eyes remain sensitive and I wear sun glasses whenever I am outside.

I observe much better eye condition since treated with O&V. Maybe there is indeed a connection CLL & eye infections.

Take care

Mungg

[Lakesup]

I have had constant red , puffy and itchy eyes for over a year. I assume it is dry eye from meds. I have worked in the optometric field for 26 years. I try to use a over the counter artificial tears such as systane or refresh which seems to help some. I have no lesions or crusty lids, only red itchy eyes with puffiness at times.

[ChristyAnne_UK]

I've had frequent issues with both eyes over the past 8 years, but mainly treatment for diabetic retinopathy, and this year, have had cataract surgeries. Since the surgery, have had intensely itchy, sore eyes, with kind of wavy 'fronds', like net curtains, (which I assumed to be residual debris from the surgeries) that move around and blur my vision to an annoying extent, although my vision overall has greatly improved.

None of the ophthalmologists I've seen have mentioned CLL. I look forward to reading the list of posts Len (Lankister Guy) has cited in his reply to you.

Thanks to both of you for drawing attention to this again.

[Doggoneit101]

I get busted blood vessels in my eyes frequently that affect my vision. My eyes have never had excessive tearing though.

[Tulear in reply to Doggoneit101]

I get that, too.

[Northland]

I've been on Ibrutinib for 4 years and started having tearing from my left eye about 6 months ago. I thought it was allergies as I also had crusting on both eye lids after sleeping. That has cleared up but I still have the tearing.

[Tulear in reply to Northland]

The tearing affects my driving, reading, and overall everything. The ophthalmologist put me on antihistamine drops and steroid drops, neither help. After seeing the specialist multiple times, he told me to come back when I start treatment. (Still wait & watch)