Dry eyes on Ibrutinib

Dry eyes on Ibrutinib

Been getting on well on Flair trial with Ibrutinib for 7 months. Recently been bothered by dry feeling eyes, not itchy just dry and sometimes gritty. Haematologist at Marsden confirmed a possible side effect of Ibrutinib. Anyone else experienced dry eyes? If so did you find any treatment that helps?

Best wishes to all you cll people out there

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13 Replies

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  • My wife had Lasik on her eyes and developed dry eyes. She uses fish oil and it works for her. If she forgets she can tell. If you start anything check with the pharmacy and doctor to make sure it is not an issue with the ibrutinib.

  • With CLL commonly causing low platelets, fish oil can cause bleeding due to the reduced platelet adhesion. There are lots of reputable references to this problem, dating back to 1988, so it should be well known:

    bloodjournal.org/content/bl...

    Given the recognised benefits of fish oil, it comes down to a careful risk/reward assessment, which of course means keeping your medical team informed of any supplements you are taking.

    Neil

  • Thanks for wise caution, AussieNeil. Will bear in mind.

    bw

  • Hi nkferg, thanks for sharing about fish oil being helpful with dry eyes. I'll follow that up with my doc/pharmacist

    bw

  • After a year on Imbruvica I noticed dry eyes. I don't remember if I consulted an optometrist or ophthalmologist but recommended using a product called BLINK (an eye drop) to help with dry eyes. Do not use VISINE because it is used for red eye and not for dry eyes. It did help me a lot.

  • Hi I had a basal cell carcinoma removed from my eyelid at Moorfields a year ago and was prescribed "Hylo-Tear" drops. I am still using them most days, as I still tend to get dry eyes on both sides. They are very gentle and easy to apply and do not contain preservatives. I wish you all the best with the treatment and hope this helps.

  • I use Hylo-forte eye drops which sound similar to the ones otonal uses. They were recommended by the Consultant Opthamologist as I have Sicca Syndrome. I'm not on Ibrutinib however.

    Try to use lubricating eye drops that don't contain a preservative.

    Newdawn

  • Given our compromised immunity, I'd think you would need to be very careful with hygiene considerations when using eye drops without a preservative?

  • Hi Neil,

    In the USA the preservative free drops come in single dose containers, and the instructions reinforce good hand sanitation and not touching the eye or lid with the container, but dropping carefully from a newly opened container.

    My ophthalmologists were opposed to drops with preservative due to the possibility of contaminating the fluid in the much larger container.

    Len

  • That's certainly true Neil.

    mayoclinic.org/diseases-con...

    I've been repeatedly advised not to use eye drops with preservatives Neil and problems with possible contamination or degradation of the contents can be overcome with individual vials if necessary. I've never had a problem however because the dropper doesn't touch the eye and is protected by a tight fitting cap. As with all things, storage and shelf life and hand hygiene should be carefully observed as Len notes.

    The type of drops to be used should really come from an eye specialist recommendation but severe dry eyes in which drops need to be applied more than 4 times a day can apparently be aggravated by the long term use of preservatives (hence the advice to me). However it's not a 'one size fits all advice'. My condition is long term and may even be of an auto-immune origin. A possible reaction to ibrutinib may be very different.

    This is a useful article describing some of the risks associated with long term use of preservatives including damage to deep ocular tissue. Some people are in fact allergic to the preservatives.

    sciencedirect.com/science/a...

    Ophthalmic advice is recommended.

    Newdawn

  • I also had blurry vision that varied from day to day on Ibrutinib. It was further diagnosed as a dry rough surface of the cornea, and the day to day variation attributed to the eye lids remaining partly open during sleep.

    Generic lubricating eye drops (without preservative) - as used by contact wearers, were suggested. These are also called "natural tears." But NOT the Visine type red eye drops. I found 3 different formulations (some people identify these by specific brand names- but as an engineer I read the fine print and recognize the specific components of the formula).

    Hydroxypropyl methylcellulose is the primary ingredient used in most OTC drops. Some thicker formulations add glycerine or polypropylene glycol to the Hpmc, but I found these to blur my vision for a few minutes and last slightly longer.

    The objective of these drops is to reinforce a natural layer of oil that covers water/moisture on the surface of the cornea, preventing it from drying.

    (Sorry for the Chemistry lesson- but it's how I learn and think).

    Len

  • I identify the two preservative free brands my eye doctor recommends by name. I'll have to compare ingredients next time I'm at the pharmacy. The thicker formula works well for me, but I felt very uncomfortable using the nighttime ointment, as it left me with vision blurred enough that I felt nervous about having to deal with an emergency. My doctor suggested switching eyes every other night if I felt I needed it. I also have plugs in my lower tear ducts (the non permanent type that are replaced every 3 months) and use prescription Restasis twice daily. My dry eye is not ibrutinib related.

  • Have had success with preservative-free Refresh "Celluvisc" Lubricant Eye Gel in the single-use containers. Single-use was recommended because of contamination.

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