Hi all, I was diagnosed with CML in 2022 and have been taking Imatinib 400mg since May 2022. By October 2022 I started experiencing eye problems, blepharitis, swollen sclera, gluey discharge, excessive oil production and some conjunctival haemorrhaging. The left eye is far worse than the right, very uncomfortable and miserable. The Imatinib is working and my last BCR/ABL number was 0.047. My haematologist knows about these issues but was not convinced Imatinib was to blame. I have persevered with Imatinib trying to deal with the issues with dry eye drops, hot compresses, supplements. I have also been seeing a consultant ophthalmologist privately who has prescribed steroids and antibiotics but nothing has worked. So with my haematologist’s agreement I am now taking a month break from Imatinib. After one week break in treatment my eyes were 90% better and after two weeks, all of my eye problems have disappeared which feels so great! So my question is about my treatment going forward? Has anyone in my situation had the eye issues resolved by a change of TKI or maybe a reduction in the Imatinib dose? And if so have you maintained a good response? Due to speak to my haematologist in a couple of weeks to discuss options.
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Hi Sara,
Eye problems are common on imatinib, but it’s usually a case of eye bleeds rather than the issues you’ve experienced. Eye bleeds look awful, but are not really a major problem - certainly not compared to what you’ve had.
In my and others’ experience, if you withdraw imatinib side effects that were caused by it can start to improve after about 5 or 6 days based on how long imatinib takes to “wash out” of your system. So with this knowledge you can reasonably accurately pin down an issue to the imatinib being the cause.
I would have thought a change of TKI is in order. There’s no need to persist managing difficult side effects when there are many other options available. I guess in the UK the obvious next step would be dasatinib, or possibly bosutinib (can’t recall off the top of my head if bosutinib is 2nd line, or only 3rd line). Nilotinib is avoided in lots of hospitals these days, where possible.
David.
Thanks David, been reading about the side effects of dasatinib and dry eye still seems to be on the list as well as the possibility of pleural effusion. With a BCR/ABL score of 0.047, would a low dose of 50mg be appropriate? Or has anyone dealt with eye problems successfully by taking a lower dose of Imatinib?
I am not sure I’ve heard of many people complain about dry eyes on dasatinib, or any eye issues really. The way the side effect lists are made is that they have to report basically anything that any patient experienced when the clinical trial was underway. So you get these odd situations where things that are listed as possible side effects are actually almost non-existent, and other times where the side effect only became noticeable over a very extended period of time so aren’t actually officially listed on the patient leaflet. Nilotinib is a good example of this, where some of the long-term cardiovascular issues are more serious than was realised during the initial trials.
Pleural effusion is not really that common, but of course is a genuine risk - even if quite a low one.
So I guess what I am saying is that if you have a good doctor, who is up to date on CML developments, then they should be able to navigate the options available to you to make a decision together.
David
Thanks David, that’s reassuring information. And thanks for your help joining the forum, makes you feel a bit less alone with CML!
Hi Sarah, dose reduction for imatinib works for many people; I was on 400 mg for over a decade with a few eye bleeds but more significant side effects like initial bone pain, cramp, oedema and gastric issues. I am now BCRABL undetectable on 200mg and pretty free of side effects. I would not expect any UK consultant to go below 200mg, and making that reduction after 2 years would be considered early. I think you have pretty much shown that the root cause of your issues with your eyes is the imatinib, so the discussion for me is a choice of trying 200mg of imatinib or changing to a second line treatment (of which I know little as imatinib has worked for me).
I hope that helps
Hi, I had lots of problems with Imatinib so changed to Dasatinib and felt so much better within days .With such a low BCR/ABL you could probably start on 20 mg ,you will have a mild headache for a few days then it wears off and you should feel like you again .Its honestly worth a try .Good luck ,Denise .
Thanks Denise, Dasatinib sounds like my best option! On the subject of dose, obviously the lower the better, but I have only been on treatment for just over two years. My overall response to Imatinib has been good; for about 9 months I was stuck at around 0.1 - 0.14, then had a sudden shift to 0.056, and latest was 0.047! New set of blood tests are booked for the end of this month and then telephone appointment with consultant on 11th September. That means I will have had a 6 week break in treatment, so a bit nervous about seeing a rise in my levels. At my stage, would 50mg be the dose to argue for? I read some info on a study which suggests the impact of 50mg is almost as good as 100mg but with fewer side effects? Thanks again for people’s input, it is very much appreciated!
Hi, less is more with Dasatinib,I would go with 20 mg ,your doc might fight with you to go on 50 mg but it’s your body , you are the one that has to live with the side effects .If it doesn’t work fast enough you can double up to 40 mg .Do not agree to 100 mg as some docs will say this is the correct dose it’s far too toxic and you could get pleural effusions then .
I experienced eye issues with imatinib for years. I had to stop drinking coffee and alcohol to prevent the hemorraging. At the end of my imatinib use I started to experience extreme dry eye. When I switched to Nilotinib the dry eye stuck around and has gotten worse. I find my issue is related much to caffeine and sugar. I do believe these side effects are a result of dosage. I believe, someday, that dosing protocols may change after all this experiential info that we, the guinea pigs, have provided for this treatment. I start de-escalation of my TKI at the end of the year. I am eager to see how smaller dosage affect my daily well being. I hope the dry eye disappears.
Good luck Sara.
Thanks Pojo, I hope a change of TKI will do the trick for me! I’d almost forgotten what normal healthy eyes feel like and it was amazing when they went back to normal so quickly! Made me realise that I need to do my own research and take more control of my own treatment! Good luck to you too with everything! Sara