Hi, was just reading the contributions re bone pain and other sides. I was diagnosed June this year, on Imatinib, and i would say ive had an array of side effects, as someone else said, not dangerously. The symptom ive had recently is very puffy eyes, i know why and how it happens , but its causing some dry, sore eyelid skin, and i know i look different, in that sense im not bothered!, but i do wear eye make up most days, and am trying to navigate these early days as normally as possible. Any advice on topical stuff please?, i dont want to consider anything else at this stage. Obviously this is a sign of wider fluid retention, but again im not too worried at this stage, no swollen ankles or anything.
Very grateful for any advice. Amanda
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Yes I experienced puffy eye while on Imatinib. I think it’s a common side. I also experienced extreme dry eyes but that was toward the end of my 11 year run on Imatinib. You can try adjusting your diet. I know for the dry eye, which I still have even on nilotinib, things like sweets and caffeine definitely affect the severity of the dryness. Was never able to figure out how to keep the puffiness at bay other than not eating a lot of salt in diet.
Thanks for that,much appreciated. Im hoping that a lot of the side effects reduce, or that i get used to them. I havent had children but somedays, most days i seem to get a strong craving for certain foods, if its salt, sugar or carbs i resist, but it isnt ever celery or lettuce! Weird but quite amusing , i think it may be just me. Never seen it listed as an Imatinib side. i will persevere with the eyes, many thanks.
Hi ,
It is a fairly common side of imatinib to suffer various forms of eye disturbance.The product literature cites the incidence as probably about one in ten of patients. The most common affect is swelling of the tissues around the eyes which medics term peri-orbital odema.You might try plant based eye drops which will give the eyelid itself some relief.If the eyelid is swollen and you have a condition called blepharitis then you might use Blephasol which is basically a saline solution-available from most opticians if not always from pharmacies.Another form of relief is a warm moist compress of cotton wool or gauze around the swollen parts of the eye tissues.
Some CML patients suffer conjuntivitis and also eye bleeds which themselves look bad but after a few days usually subside-if the conjunctivitis is painful and of a bacterial origin then an eye paste of an antibiotic type like Fusidic Acid or branded Fucithalmic might be used.If one suffers long term with eye issues from imatinib it might be advisable to seek help from an opthalmic specialist to check that the optic nerve of the eye is not being affected (via a scan).In addition one might need to assess whether eye pressures are being affected or macular degeneration is developing.
Eye issues might only be present in the first six months or so following diagnosis but sometimes are persistent.
Having been on imatinib for 17 years my eye issues have not gone away and some days I look like I have not had any sleep or have been in a boxing match.Recently at a consultation with one of my general practitioners(on another matter but I was briefing her on imatinib) who was not au fait with the side effects of the drug said "I presume that your eyes indicate some background of Asian descent just like myself"-she was in part Malaysian Chinese by background apparently.!
I have concluded that there is very little that I can do about this side effect;your haematologist will disregard such side effects unless they are serious and of Grade 4 severity (scale 1-4).
Best wishes,
John
Hi John, and thank you for that very comprehensive and useful reply, and indeed, reassurance. I can see (literally) that the eye stuff is part of my getting used to long term Imatinib, unfortunately i have the skin rashes and eczema side effects to deal with at the moment as well, but i have managed to see a GP and sorted an anti histamine when needed. As ive said before this is such a useful forum to have at your fingertips, but i know i have so,so much to learn and get acclimatised to. Thanks again for your help.