Dizziness and vision problems

[Nuttydogs]

My mum is 6 weeks on Intrunib and is having a worrying spell of partial blindness and dizziness not being able to walk on her own has anybody else encountered this and how long does it usually last. She is waiting for a call from the CLL nurse for an appointment. Thank you

[DebKat999]

I see from your previous posts that your mother has had issues with dizziness before, but if her partial blindness is a completely brand new symptom, I would urge you to get her checked as soon as you can.

I certainly don't want to alarm you, but I know that sudden partial blindness can sometimes be one symptom of a stroke, so it's best to get it checked to be sure either way.

I'm wishing you and your mother the very best.

Debbie

[Nuttydogs in reply to DebKat999]

Thank you for your reply its very worrying we are waiting for an appointment in the UK for her. I, m hoping its just a side effect from Ibrutrunib.

[Nuttydogs in reply to Nuttydogs]

Hi, she has been seen by a doctor and he did loads of tests and said he can't find anything wrong and to keep taking the Ibrutrunib and see how it goes. Hopefully the blurred vision will pass.

[mrsjsmith in reply to Nuttydogs]

Hello,

Where are you based in the UK ? Has your mother been seen by an Ophthalmologist ? Is there an eye department in your local hospital.

Hope you find the cause soon, it must be worrying for you both.

Regards

Colette

[Nuttydogs in reply to mrsjsmith]

Hi, the doctor said the same so she is booked to have her eyes checked out. Thanks.

[Nuttydogs in reply to Nuttydogs]

She is in Kent.

[Shaheenji in reply to DebKat999]

I am on ibrutinib 3 caps.daily for the last 2month's and having same sort of vertigo and partial loss of vision 75% like nuttydogs but otherwise have improved, white blood 7thousand ,lymphoma 50,neutrophil, visible lymph glands have susided, fever has disappeared e.g I say I am 80% better but I am heading towards some sort of visions problem I like spinach, lemon water, eggs off on green salad yugurt m/vit tablets ,zyloric 300 daily love music of all types.sometime

[Nuttydogs in reply to Shaheenji]

Hi, it seems like vision side effects are a side effect of Intrunib.

[Shaheenji in reply to Nuttydogs]

No dear,we can't blame ibrutinib as it's new Comer e.g just a few years of its arrival n such a blame can't be labelled unless it has been vastly tried.but the experts are reading n examining our letters n their own result n will come to certain final results but I did loose the vision whether due to cll or the medicine.

I very STRONGLY believe in God MAY he help us all who are not well on this planet.amen

[Nuttydogs in reply to Shaheenji]

Thank you for your reply

[starsafta]

Comforting to know the doc didn't find anything major.

In your original post, you called the problem "blindness." In a later response, you used the word "blurred vision." There is a big difference between the two, and it can be helpful to those of us reading and wanting to respond to use language that more specifically describes the symptoms. Of course, it's possible that both applied in this case.

A few months after starting Ibrutinib, I was unsettled by both blurred vision and zigzag light flashes off to the side of my vision. The latter seemed to be brought on after time spent staring at a large computer monitor or when sitting at my drawing board under a bright art light. It typically took about 20 minutes for the flashes to stop. An ophthalmologist confirmed, the next day, that there were no physical problems, and that the flashes are called "visual migraines." I lowered the brightness control on my monitor, and try to take more frequent breaks at the drawing board to minimize triggering them.

My research showed that both blurred vision and light flashes can result in a small percentage of those on Ibrutinib. I spoke with someone at Pharmacyclics who said that these effects tend to go away somewhere between 2 weeks and 2 months after onset. In my case, it was closer to 2 months. After 39 months on Ibrutinib, the flashes continue to be triggered under certain conditions, such as turning my head when the sun is low, and rays find a path through tree branches to shine directly into my eyes.

So if your mother's blurred vision is caused by Ibrutinib, it will likely abate in time. Until then, I know full well how unsettling and annoying it can be. And particularly if your mother has a tendency to be dizzy anyway, blurry vision likely exacerbates the condition, potentially affecting balance.

I hope your mother responds well to the Ibrutinib.

[Nuttydogs in reply to starsafta]

Thank you for your detailed reply at the time it happened she did say both blind and blurred I think she was panicking, really hope it passes in time.

[Nuttydogs]

Thanks she has seen a doctor now and is OK just hope this vision thing passes.

[livinglifewell]

I agree with most posters that the sudden vision loss needs to be checked on immediately. Something like that occurred to me once and it was a retinal bleed. The ibrutinib can cause bleeding issues.

[Nuttydogs in reply to livinglifewell]

Checked out with doctor and OK. Thank you.

[Miller1960]

When I first started Ibrutinib six months ago I experienced blurred vision. I had my semi anual eye exam just before I started Ibrutinib and my prescription was changed. Within weeks on Ibrutinib the blurred vision started, I booked back in and had another exam and they found my prescription had changed. I've adjusted to my new prescription and am currently taking 140mg of Ibrutinib.

Miller1960

[Nuttydogs in reply to Miller1960]

Thanks for replying. Useful to know.