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Eye Bleeds

Eye bleeds and eye pain are a common issue on these pages, whilst they are normally nothing more than a bother I would like to plead for a bit of caution.  On Sunday after sitting down to watch a bit of TV I lost the vision in the lower half of my left eye, prompting a quick trip to A&E.  Here they informed me that I had suffered a blood clot in an artery within the eye.  I am now awaiting an appointment with the Opthalmic Consultant.  I saw my optician on Tuesday and she gave me a very thorough check up, confirming A&E's assessment.  She has forward the results and photos to the consultant.  In her opinion my eyesight may revert to normal overtime, but there are no promises.  So please if you have any concerns get your eyes check.

Regards

Paul 

I've had many eye bleeds in the past and most of them have been relatively mild - clearing within two or three days. Around 6 weeks ago I had a fairly bad one, in the context that it was a heavy bleed, the eye was very red - almost black - and took around three weeks to begin clearing. Before it cleared completely, it bled again. All in all, 5 or 6 weeks later, it still hasn't cleared fully.


I've asked Doctors at Manchester and Preston about this. The general opinion is that it's not a problem. I pushed it last time I was there and wanted to know what was actually causing these bleeds. He said that low platelets was the likely cause. I pointed out that under interferon for 8 years , my platelets were at a much lower level than the are now - but I didn't get eye bleeds then. I've only had bleeds after going onto Glivec. His second attempt at an explanation was that CML changes things - meaning that although the platelets might be higher in number, they might not act the same way. i.e, they might not bind as effectively.

Reflecting on this, I wonder that if the platelets don't bind as effectively as before, [in the doctors word " they might not be as "sticky"], is there a danger of bleeding elsewhere in the body? If so, then is there a danger of more serious bleeds elsewhere in the body, like in the brain? If not, why is it only happening in the eyes?

 

I don't want to alarm anyone at all, but it seems to me, following on from Paul's post, that some answers are needed. Anyone have any answers?

I'm very interested in this thread as after nearly 5 years on Glivec, with no eye bleeds, I have now had 4 since September. 2 were quite bad - half the white deep red. I still have one of these bleeds now. They look awful, but I feel quite scared when it happens. On at least 2 occasions, the bleeds have followed headaches. Scarey. I feel like I'm being fobbed off by my GP as he sent me for a blood test (including a coagulation test) and because that came back ok, he just says well it must be a side effect of Glivec then. Really? I have been on the drug so long, why now? I mentioned the first couple at my last specialist appointment. Again, side effect. I think I will be more assertive at the next appointment. To me this is quite a distressing side effect now as I am a teacher and I think it scares the kids too. Anyway, does anyone have any remedies or ideas?
Thanks
Jeanette

Hi Jeanette

I used to suffer with them when I was on imatinib.

I would go and see your optician and ask them to check that nothing else is going on.
It probably is the medication but best to get it checked by an opthamologist.
Good luck
Steven

I don't have any real answers to this very commonly reported side effect- and I am not sure that clinician or anyone else know why this happens to so many CML patients treated with TKIs. I have just uploaded an ASH abstract on the home page which is about some recent research into why nilotinib (and including imatinib) can have an effect on the vascular system in some people and it seems that it might suppress certain cells like vascular endothelial cells and other related cells (kit+ mast cells) that are major repair cells in vascular disorders.....see snip below.

This research might hold some answers.

( 257 Nilotinib Exerts Direct Pro-Atherogenic and Anti-Angiogenic Effects On Vascular Endothelial Cells: A Potential Explanation For Drug-Induced Vasculopathy In CML.
Authors: H Emir, K Albrecht-Schgoer, K Huber, et al

'.... As assessed by immunohistochemistry using antibodies against KIT and mast cell tryptase, we also found that in our CML patients, nilotinib induces an almost complete depletion of KIT+ mast cells, a cell type that serves as unique source of heparin and uncomplexed tPA and has been implicated as a major repair cell in vascular disorders. However, imatinib was also found to induce mast cell depletion in our patients with CML.

Neither nilotinib nor imatinib showed in vitro or in vivo effects on platelet adhesion or platelet aggregation.

In conclusion, nilotinib exerts multiple effects on vascular endothelial cells and other perivascular cells such as mast cells, presumably through multiple mechanisms and targets. We hypothesize that these effects may contribute to nilotinib-induced vasculopathy in CML.'

https://ash.confex.com/ash/2013/webprogram/Paper57422.html

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Also..... if you are taking other drugs for other conditions or take painkillers you need to find out if they are contra-indicated with IM.
In particular you should be very cautious about taking aspirin or ibuprofen (Nurofen) with imatinib as they both will affect platelet function. Instead you might take paracetamol for headache/general pain etc.

I have done a little digging regarding this and found the following information on the american cancer society website: http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdr...
Regarding side effects such as bleeding with imatinib it says the following:

Any drugs or supplements that interfere with blood clotting can raise the risk of bleeding during treatment with imatinib. These include:

vitamin E
non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Advil, Motrin), naproxen (Aleve, Naprosyn), and many others
warfarin (Coumadin -- see note above)
ticlopidine (Ticlid)
clopidogrel (Plavix)
Note that many cold, flu, fever, and headache remedies contain aspirin or ibuprofen. Ask your pharmacist if you aren't sure what's in the medicines you take.

I agree that you should get your eye's checked if this is happening regularly or is a particularly serious bleed. The blood vessels in the eye obviously become more prone to bleeding when taking IM or other TKIs for some reason and it should not be just dismissed as a 'common side effect' if it is affecting your quality of life.

It could be that the pressure in the eye is affected and might be raised (as in the case of Glaucoma). This condition is treatable with eye drops- but is can permanently damage the optic nerve, so if not caught early it can lead to vision loss if it is not treated. Best to see a good optician so you can rule this out.

Also... maybe IM makes the eye dry? even though many suffer the side effect of periorbital edaema, it does not means that the eyes themselves are adequately hydrated. Maybe some kind of 'false tears' (these can be bought over the counter) might help?

Otherwise I can only suggest you might get some relief by bathing the affected eye in a weak solution of sea salt and warm water.

Homeopathic remedy called Euphrasia is specific to eye problems- red, itching etc. worth a try?

hope this helps,

Sandy

Thanks Sandy and others who have offered kind advice and thoughts. After almost 5 years I had begun to not think about CML every day and so the eye bleeds are a reminder again that things are not as they should be. However, a small price to pay I know for generally good health and the blessing of a longer life and happiness. It's interesting though how many of us have this side effect.
Thanks again

Jeanette

Arnica (homeopathic tabs of 30c) is excellent in healing bruising and trauma of any kind- the blood that is visible on the white of the eye is like a seeing a bruise that is not covered by skin.

You can order Arnica from Ainsworths Homeopathic Pharmacy, New Cavendish St. London W1... they have a website and/or you can order by phone- next day delivery.

Sandy