Cells dying in the retina

[GailCat3]

Has anyone had severe eye sight decreasing after being on Ibrutinib 240mg a day? I’ve been on it for 2 years. My eye specialist (here in CA) had me go to UCLA eye specialists . The cells in my retina are dying and they don’t know why? All in all I could lose my sight completely unless we find the cause. I called the manufacturer of the drug and they have never had a case like mine. My UCLA Dr. researched it also and said it was alright to take it. It has kept my cancer stable except for having toget IVIG’S and iron infusions. I feel funny to take it because I’m afraid it still might be the cause but there’s no merit so I take it. Can anyone suggest what I could substitute for it?( ibrutinib) I hope this is correct, this text, cuz I have to hold a lighted magnifying glass over the letters to see. That’s how bad it’s gotten over 2 months😔. Thank you

If the Ibrutinib keeps me stable , what other drug would maybe do the same? GailCat3

[Hidden]

acalabrutinib

[Chemtrails-USA]

Acalabrutinib (Calquence)?

Stop Ibrutinib for a bit?

2nd-3rd opinions?

So sorry you are going through this, GailCat. Hope this passes soon.

Keep us posted, please.

- Bobby

[MsChief]

I am similarly impacted by eyesight problems - particularly in my right eye where I had laser surgery 10 years ago or so for a detached vitreous. I also have cataracts in both eyes causing rainbow halos from oncoming cars at night. In the middle of last year the pupil in my right eye suddenly doubled - my ophthalmologist said it might or might not revert to mostly normal within a few months. After 3 months it did return to a single pupil but the ophthalmologist said “pieces” of the pupil remain down below the surface - he aaid the only way to correct it is with cataract surgery but he is not anxious to do that now - said “some time” within the next year. I also have an occasional ocular migraine. My eyesight is getting worse. - have problem reading TV synopses. I am 76, on low dose Ibrutinib, 140mg 4 days per week, 280mg 3 days per week. I feel as you do better on Ibrutinib as long as I can tolerate it. Akso IVIG minthly. And do the journey continues.... Best wishes to you Gailcat3. Keep us posted on your progress. P.S. I do not think for a moment that pharmaceutical companies know or admit to many of the bizarre side effects potential with any toxic drug that goes into the human body.

[cllady01 Former Volunteer]

GailCat, has the Dr. given a name to what is happening? Is it being said that what is happening is not one of the possible diseases of the eye that do occur as we age, such as Age-Related Macular Degeneration or Glaucoma (the most prevalent ones, at least to my experience).

If not, is there any statement regarding the possibility of infiltration?

Has anyone addressed the possibility of the iron infusion effect on retina?

ncbi.nlm.nih.gov/pmc/articl...

[country76]

I am so sorry this is happening to you. I have ocular migraines and headaches. My vision hasn't changed. Just had it checked.

[MsLockYourPosts Passed Volunteer]

GailCat - Sent you a “chat”.