Hi I am now experiencing eye bleeds 2/3 a month. I've also noticed that they increase as soon as
I take any form of anti-inflammatory. 3 times now I have rubbed at bit
of Ibuprofen gel into my skin and the next day get an eye bleed. It's becoming a rather
annoying / very painful when it happens, especially when I need to take anti-inflammatory's
for my hips & back pain which I now can only take co-codamol.
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Eye bleeds / Glivec
Please read the various threads on supplementing with magnesium. There are various ways you can do this and on a recent thread I have given several links which might be worth you looking at.
I have found that regular daily use (2 times a day, every day) of magnesium oil or cream has really made a difference to the way I feel in general and specifically with joint pain in my knees and lower back. Of course not everyone finds benefit from using supplements and it does take time, but if you are now only able to take a strong painkiller like co-codamol, it might be worth trying to find an alternative way.
Regarding eye-bleeds: many have posted about this common side effect. If your PCR results are low and you are responding clinically to imatinib, then it might be worth talking to your doctor about your quality of life on this particular TKI. Side effects can be an issue for lots of patients and joint pains and eye bleeds and the levels you describe sound pretty intolerable. You might benefit from a talk with your doctor about changing therapy?
best wishes,
Sandy
Thanks very much Sandy for your advice. I will definately try magnesium as you per your links. I've got appointment next week at Hammersmith where I will certainly ask about switching from Glivec, althoughI would be very nervous doing so, as I've been on Glivec now for 9 years nearly 10!!! and was on 400 and last year reduced down to 300 still my pcr around 0.007 ish which is excellent but would they let me reduce again to 200???? Big question!!!!! I expect not! We will see. My vitamin D levels are low so I also supplement with a strong Vit D as per my local haematologist.
Angela, well done for achieving such a low PCR. 0.007% from the Hammersmith lab is pretty good in my book as their 'machine' is extremely sensitive- your are virtually at MR4.5 on the IS - (0.0032%) and it sounds like this is pretty stable over time?
There is a planned UK trial called DESTINY which HH will be involved in when all the regulatory stuff is sorted out (hopefully later this year) that will recruit patients who have low MMR to reduce their dose to TKI by half for a time- then if stable MMR is maintained at the reduced dose will Stop therapy.
Depends who you see at HH but do ask if you can change TKI- your side effects sound pretty bad even at a lower dose- and your quality of life is definitely affected, especially with the joint pains. Vit D3 level is crucial too- I take 5000 iu per day.
Interesting to hear what they suggest.
Good luck,
Sandy