Possible Side-Effect of Ibrutinib

[zentangle]

Hello Everybody,

Some of you may remember me from a few years ago - I have composite CLL/MCL and have just started on Ibrutinib after an auto SCT five years ago,

The reason I am calling upon this group again is that I have developed a very slight yellow tinge to my vision. I've been on Ibrutinib for a month now - no other side effects and no signs of jaundice, which is my first thought.

I was just wondering if anyone else had had this symptom and what happened.

Kind Regards,

Steve - Zentangle

[PaulaS Volunteer]

Hi Steve,

Good to hear from you again. Yes I certainly do remember you, from several years ago.

When I developed cataracts, everything appeared a slightly muddy/yellow colour. This may not be your problem at all, but I thought I'd just mention it.

My optician had told me long in advance, that I had cataracts developing, but in these days of Covid, most of us are not having the regular eye checks we used to have, so may not be aware of eye changes.

Best wishes,

Paula

P.S. By the time I had my cataracts removed, I'd been on Ibrutinib for 2 years, but the eye problem was there long before I started Ibrutinib.

[zentangle in reply to PaulaS]

Hi Paula,

Of course, I remember you and your kindness very well. I do hope you are well. I am seeing my consultant on Friday, but knew that this community would provide me with some possibilities!

As you know, I've just started on Ibrutinib, after getting five years out of my transplant. I was offered 6-8 when I had it, so I'll take that. I notice that you, too, are on Ibrutinib. How is that going?

Write back soon,

Steve

[PaulaS Volunteer in reply to zentangle]

Hi Steve,

I wish you’d had a longer remission after your transplant, but at least there are other drugs we can now turn to.

I’m doing OK on Ibrutinib now, but in the early weeks I had a lot of difficult side effects. As time passed most of them eased off - great relief. Later I was able to reduce the dose of Ibrutinib to 140 mg, and have been on that ever since.

Below is an account of my first 6 weeks on Ibrutinib. Everyone is different though, and if you’ve now been on Ibrutinib for a month and haven’t had any side effects yet (apart from the vision), then you’ve done well.

healthunlocked.com/cllsuppo...

Are you still teaching, or have you been furloughed?

Take care and stay safe,

Paula

[AussieNeil Partner Administrator]

Welcome back Steve,

I too thought the same as Paula. The most well known case of this happening with cataracts along with l reversal after cataract surgery is with the artist Claude Monet:

livescience.com/1512-blurry...

[zentangle in reply to AussieNeil]

Hi Neil,

Hope you're well!

Regards,

Steve

[wroxham-gb]

Hi Steve

I to remember you. Good that your're pleased with the 5 years you got from sct.

I am also on Ibrutinib and next month it

will be 3 years for me so all the best for you.

I have had a few problems mainly stomach connected but not sure it's Ibrutinib or previous treatments.

Hope the Ibrutinib works well for you.

Sue

[zentangle in reply to wroxham-gb]

Thank you, Sue. All the very best.