Posted 04 June 2014 - 09:44 PM
Hi there Teb,
Yes! I have a very similar problem - I have always had somewhat dry eyes, I had difficult wearing contact lenses for longer than a few hours. But the Gleevec has made this problem substantially worse. I had some pretty extreme pain in one eye before I went to see an ophthalmologist about it, and we have tried all the conventional things, gel at night time, drops throughout the day (I was taking them every 30 mins and only limited relief) - the warm compresses also did very little for me unfortunately. I also learned through this process that I have nocturnal lagophthalmos (where your eyes don't close fully when you sleep), which makes sense as my eyelids always feel like sandpaper in the mornings.
The latest thing I have tried is punctal plugs (both eyes, in the lower puncta) and this has been extremely effective for me - unfortunately though, they can fall out, I lost my first one the other day after 9 months, and it was immediately noticiable how much drier my eye felt.
Another thing I am trying to combat the nocturnal lagophthalmos is a sleep mask by something called tranquileyes. It hasn't arrived yet, I ordered it last week, but I am hopeful that limiting the dryness overnight by preventing air getting to my eyes will also make a big difference to how my eyes feel during the day.
The issue I am having is how do I manage this long term? I don't want to have cauterising of my puncta done (permanent) because if I am ever lucky enough to stop treatment, or even if I change medications (highly likely at some point), things may be different. It is a difficult problem, which I don't have an answer for yet!
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14