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Swollen eyes on Imatinib

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Hi
 

I got diagnosed in April this year with cml. This is my third month taking Imatinib 400mg. In the last few weeks I’m suffering from swelling in eyelids and under eyes daily. 
 

just wondering if anyone else suffered from this and if so did it improve in time?

I was on Imatinib for 11 years and through that time I had issues with my eyes. After a few years I developed Subconjunctival hemorrhaging. I found if I cut out coffee that it stopped. At the end of my time actually last April I was suffering from dry eyes, eye pressure, and hemorrhaging again. My oncologist told me to cut out fish oil pills that seemed to stop the hemorrhaging. The dry eyes seemed to be related to coffee, yes I tried to start again, and sugar. There is actually a DNA test to see if you have an allel, a genetic disposition, to eye issues. Turns out I have it. I am still having issues with my eyes but it seems like it is fading so I am guessing that it’s related to a withdrawal to the imatinib that is still in my system. I have switched to nilotinib which has its own set of side effects.

My advice is to try and cut out things in your diet that may trigger the symptoms. If you’re new to the drug it could also be your body trying to get accustomed to the medication. A lot of time the side effects will subside but it can take time. Be patient but also look for the triggers. There is usually something behind a side effect that is spurned on by something in your routine in conflict with the drug. Good luck.

Hi Pojo

Thank you for your reply that was really helpful. I’m hoping the swelling around my eyes will get better in time but will look into how I could help reduce it by diet. 

Swelling around the eyes is quite common. Diet and lifestyle adjustments may help to mitigate the severity. I can tell you I had swelling for years and then when I switched TKIs it almost went all away.

Hi Evie

I was diagnosed with CML in November 2020 and like you have had the same problem with my eyes, swollen eyelids and under eyes.

Sadly its a side effect of taking Imatinib as unsupported tissues (as in the eye area) swell with fluid. I have tried absolutely everything to try and get the swelling down, but nothing really works long term. I use cold compresses, have tried a jade roller to gently sweep under the eye area towards the temple,I drink lots of water to try and flush the swelling away and I have a really good diet but that makes little or no difference at all.

I had a 2 week break from treatment early on and my eyelids went straight back to normal, but as soon as I started on Imatinib again the swelling returned. Some days they swell less, others more, but in the grand scheme of things its a very small price to pay for a drug that's giving you your life back!

The only hack I have found recently that works wonders are eyelid tapes. You can buy them online and they work amazingly to give you an eyelid again. They are small crescent shaped stickers (for want of a better word) that you place onto the crease of your eyelid and they lift the lid up. Honestly, the first time I used them I cried with joy seeing my normal eyes again! They are only a temporary fix but better than nothing I suppose.

Hope this helps and good luck with your treatment

Kind regards

Janet

Hi Janet

thanks for your response. I did wonder if this could be long term as like you I have also tried  face roller, diet and still no luck. I will look into the eyelid tape and hopefully this will help.