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Internal Eye Bleeds

Has anyone had this problem? External eye bleeds in the white of his eyes have been a consistent problem for my husband Edward since he was diagnosed almost 9 years ago. Nuisance factor only as they look unsightly but cause no harm and dissipate after about a week. However, this week he could see some dark spots, fibrous lines in the top left hand corner of his left eye and went to our local optician to check it out. This resulted in him being sent as an emergency to the hospital with a suspected detached retina. Good news is that it isn't, bad news is that he had an internal eye bleed which although minor can cause damage to the eye if they are large enough to form a clot. Both the optician and the ophthalmologist at the hospital thought that the Glivec Imatinib was to blame, although they are outside their level of expertise. Our haematologist has reduced his dose from 600mg/day to 400 and they'll obviously monitor that. But it is worrying as nothing can be done to prevent these bleeds and anything that affect eyes is obviously concerning. 

 

 

Hi there

Yes, me!  About two weeks after starting treatment for my CML on dasatinib, I was watching TV and suddenly I heard a gentle “pop” in my head, followed by a moment of complete blindness.  Immediately after this, it was like a spider’s web of blood trickling over my left eye, which seemed to disperse, and then I had a large, kidney-shaped spot right in front of my central vision.  I couldn’t see a thing in front of me except this red spot.  Vision in my right eye fortunately remained normal.

Of course I freaked out and arranged for someone to take me to the emergency room where, as luck would have it, an ophthalmologist was on duty.  He examined my eye with that special machine that produces a laser image of the eye, and noticed that I had no fewer than FOUR eye bleeds on the retina – there were no bleeds in the front of my eye, but four in the back!  Unfortunately this latest one was smack-bang in my line of vision. 

When I told him that I had CML, he said that it made sense to have these bleeds.  Apparently one’s blood becomes thick when there are so many white blood cells and that causes the tiny capillaries in the eye to burst, leading to these retinal bleeds.  They can apparently be divided into various groups, such as “flame-shaped” or “boat-shaped”, and there are also certain spots called “Roth spots” that are common in leukemia patients.  I have done extensive research online about this topic and there is an article called “The many faces of a retinal haemorrhage” that provides detailed and useful information.  My ophthalmologist said he thought it was caused by the CML itself and not by the dasatinib, and he said that many patients are diagnosed with CML after a routine ophthalmologic examination because the eye bleeds are a sign of CML!  I don’t have any experience with imatinib, though, and I know it can itself cause eye bleeds, but from what I have read, these bleeds are more often in the front of the eye and it’s quite unlucky to get them on the retina.

It’s now eight months since the eye bleed and I still have distorted vision.  The bleed has cleared immensely, however, and I would say it’s 99% gone – but man, did it take a long time.  I even had a minor road accident because of it – looking in my rear view mirror, I missed a stationary motorcycle right behind me because the red spot was covering it and I hit it, fortunately without a lot of damage.  My doctor said that the bleeds resolve over time in most cases as they are reabsorbed by the eye.  He did offer me the choice of seeing a retinal specialist, who can apparently drain the blood with laser surgery, but the procedure is risky as the retina is primarily composed of nerves, so a small mistake by the surgeon can result in permanent loss of vision.  Don’t be surprised if it takes over six months to reabsorb!

I hope that helps a bit.  Good luck!

Best wishes

Martin

Thanks for the response Martin, quite informative, seems I'll just have to persevere until a further check up at the Eye Clinic in 12 days time and whatever time it takes to clear.

Best wishes Edward & Theresa

 

My cml was found though an eye issue, as many are, as you say thicker blood etc. I post as I had a bad detached retina 19 years ago, long before my cml and had the same " pop ". took 6 days to get it diagnosed, then needed surgery, it was uveitis. Returned to normal in time. I used to get very bad eye aches before this, for years when really tired, then they cleared after the pop, pressure release I gather. The blood disburses and vision returns, I still really see the damage in fog, as in weather, really noticeable then, but otherwise ok. Hope gets better soon. 

Our checkup at the ete clinic is next Monday 8th August. Have thought of more questions now, we'll report back next week after we've been.

It hasn't got worse, staying just the same but from what we've learnt here and at the clinic we're going to have to be patient.

Been back to eye clinic this afternoon. Excellent attention, 4 lots of blood samples taken to assess a range of things inc.  chlorestorol, sugar level, kidney function, inflammatories(?) , also blood pressure taken and after a long manual scan, Edward then had an Optical Coherence Tomography Scan which gave a view of the back of his eye straight on, in profile and 3D. The blood was obvious and even we could see where it is and the difference between that and his other eye. So we need to wait for the results of all the tests and are going back on 1st September. But it is most likely a blocked vein but as yet cause unknown and maybe we will never know. The doctor didn't make a great deal of it, they happen to people who aren't suffering from CML and could just be age (he's 59). His vision is slightly better than it was but the 'blood spot's are still there and as we now know may take a long time to dissipate.

Hi there

I remember you said that the follow-up visit to the eye clinic would be today, on 1 September and was just interested to hear how you are getting on? These bleeds aren't pleasant, and one has to wait quite a while to be rid of them... I guess that's why they call us patients!

Hope it's good news.

Best wishes

Martin

Apologies for late reply - been away for a break.

Edward had further tests, including one where they injected a dye into his blood system then watch his eyes when it comes through the back of them.

He was described as 'a bit of a mystery'! They did find out that he had bleeds in both eyes (which is worrying), may have been happening for years but only noticeable when lately he had one that was worse than usual.

There aren't any clots though, which is good news.But they can't do anything either and aren't sure whether it's the Imatinib or the CML that are causing them.

They want to see him again in October and check on things. But if his vision does get worse then to call up and get an appoiintment as soon as possible.

Been to the CML clinic, they couldn't offer any more advice and kept I'm on the lower (400mg) dose.

So can't do anything, just watch and wait ......

Hi Edward

Thanks so much for the update.  Sorry to hear that they weren't able to pinpoint the cause of these bleeds.  I hope that they resolve sooner rather than later - good news that there aren't any clots though.  They aren't pleasant at all and take so long to resolve - hopefully things look a lot better at your next appointment in October.

Best wishes

Martin 

The appointment in October went well, they still couldn't find anything actually 'wrong' and with time over the last month the black spots have disappeared. Another check up in January, but they seemed to be close to discharging him last time.

I'm posting this now to let you know that some good has come of this! We been for the latest checkup at haematology 2 weeks ago and the results back in now show that the reduced dose on Glivec (400mg) is fine, and working so far as well as the 600mg. One theory was the Glivec was causing the eye bleeds so reduced dose of that may be the end of the problem. of course, it's always best to have the lowest effective dose of anything.

Many thanks for your help.

CML's Christmas gift this year: retinal hemorage  :(

 

Was diagnosed 6 months ago and about a week ago, I thought I felt something and immediatly got floaters all over my eye. I didnt think floaters were anything to be concerned about, but they remained for days and caused a kind of "darkening haze" in my left eye. After about a week, the sight in my left eye became worse, fuzzy...like someone put vaseline on my glasses. I consulted my hematologist who sent me to an opthamologist and he diagnosed a retinal bleed. 

By the time I saw the doc, the bleed had stopped and doc prescribed bed rest  (remaining horizontal) to help it clear. Noteworthy is that I had no external visible sign of bleeding.

Sorry to hear about your detached retina. I  had exactly the same 20 years ago, I had always got really bed eye ache when tired. I had a definite Pop and then the same as you. I assume you have seen a eye specialist, as when I had the issue they were either going to laser the detachment, or add a buckle, a little thing attached to the eye. They did the later and 20 years later no issue. Hope you feeling better and the blood is clearing internally

hi,  I also had a couple of retina hemorrhages which gave me permanent floaters on both eyes.  Since I had been through all three TKIs,  and it only happened to me when I was taking Imatinib, I would say it is more likely the cause.  Imatinib also causes other internal bleeding for me, such as in the mouth and in the stomach, I think low blood counts may be the reason behind.   My blood counts are higher when I am on the other two TKIs.  If you already had one eye bleeding, it is more likely that you will have another one, switching can be an option after consulting with your doc,  because you don't want see everything foggy or become vision impaired, then it will be too late.

I was switched from Tasigna to Imatanib becuase of the bleed

 

I'd had 4 nonths trouble free on Imantanib but the response wasnt strong enough, so we switched to Tasigna, now I'm back on Imatanib....go figure

Urgh....am a bit scared now. I was told it was a bleed not a detachment but I do get that tired eye ache that you spoke of.

 

After a week of bed rest my eye was pretty much 100%, then I did some dancing on NYE and all the fuzz is back again. Opthamologist says I need to lie down again, but thats not really possible till 22nd and I hope im not cuasing myself long term problems (or long time to reabsorb)

A naturopath friend of mine rrecommended castor oil for getting rid of floaters. I tried....it stings like hell but did clear things up a little bit.

Hi sorry to hear this. I saw a local optician who could not see the issue and so saw an eye specialist that was able, with better equipment to look at he back of the eye better. I had the repair to the detachment and have not had the ache after. I had uveitis if I recall right. Unlikely it is the same issue, but you never know. Hope you get sorted soon. Nigel

Update:

Now 20 days after I was almost clear, the vision in my left eye is worse than ever and not improving. I have been told I have bleeds in my right eye too but so far they have not been causing vision loss. (I was fully checked at an eye hospital). The back ground was that i moved from 400mg imatnib to 300x3 Tasigna , then got the bleeds. Now I'm on 600mg Imatanib.

Screen work is really annoying with the loss of vision and consequent lack of depth perseption and i work online. I'm scared, frustrated and horrified that folks on the forum took 8 months to clear. Was not helped by the doc at the hospital suggesting that I should be happy to have any sight in the eye (really....what the hell??)

Longer update in case of interest:

http://www.cmlsupport.org.uk/thread/11339/update-my-eye-issues-and-side-...