Any side effects

[Mimi4times]

Just wondering what side effects anyone on this site have had on: IBRUTINIB ?

Mimi in GA

[TimHB]

Everybody is different. Some people have no side effects at all, others can't tolerate it and have to be taken off ibrutinib altogether. I've been on ibrutinib for 8 months now. I have bone and joint pain which I manage with Tylenol. I've had damage to my esophagus and to the lining of my bladder which are both being treated. And I got AFib in my 5th month which is also being treated. I had pre-existing high blood pressure so may have been predisposed to the AFib. All in all, these side effects are far better than the symptoms I was struggling with prior to treatment and my numbers returned to the normal range so I'd say it's been well worth it.

[Mimi4times in reply to TimHB]

Thank you, everyone is different.

Mimi in GA

[Girldeer in reply to Mimi4times]

My white count was 164,000 when I started the medication in Nov. Then I started having really bad all over body cramps, depression, oral and rectal bleeding, I have trouble standing for more than an hour or so before my body starts to cramp, I have trouble sitting for any length of time before my body starts to cramp on my sides, feet, hands, calves, hips, neck, shoulders etc, my ankles don't want to bend an move correctly after sleeping or sitting. my hands and wrist do that also. Even using The restroom can develop into really bad body cramps. Showering also. The Dr lowered the dosage hoping it would help. It has some but it's starting to getting really bad again. The positive side of this is my WBC is down below 64,000

[Mimi4times in reply to Girldeer]

Mercy! You are going through so much! Glad the white count is down; how old are you?

Mimi in GA

[annmcgowan]

Hi I am on Imbrutinib almost 1 year now. I have had the following side effects, all transient and very manageable:

Mild tinnitus - which I never notice unless I listen for it

Mouth ulcers - occasionally which are treatable with mouth washes etc.

Petechiae- low level bleeding which appears as small red dots on the body, not problematic, worrying or unsightly

Finger nail breakage - can get sore but treatable with biotin

Bruising - not too much or too bad.

I have been very lucky not to have experienced any of the more serious side effects.

I am very happy on ibrutinib and delighted with the outcome. My bloods are now I n normal range and a recent scan showed no enlarged lymph nodes. A bone marrow scan showed a very good partial response with more than a 90% reduction of CLL cells in the bone marrow.

Regards

Ann

[Mimi4times in reply to annmcgowan]

Thank you for your input.

Mimi in GA

[Mimi4times in reply to annmcgowan]

Good for you! 👍🏻

Mimi in GA

[annmcgowan in reply to Mimi4times]

Thank you. I forgot to mention curly hair as a side effect in my case. Fortunately I love it.

Good luck to you

Ann

[Mimi4times in reply to annmcgowan]

And I already have naturally curly hair!

🤣

Mimi in GA

[annmcgowan in reply to Mimi4times]

👍

[Patrick1960 in reply to annmcgowan]

I have been on Ibrutinib for 8 months now and have had the same side effects with the addition of diarrhea or sometimes loose stool but it is manageable. The other side effect I have ongoing is fatigue. I can't seem to get rid of this one. Any recommendations for fatigue?

[CLLCalifornia-USA]

Hi Mimi,

I’ve been very fortunate taking Ibrutinib. Lymph nodes disappeared, swollen spleen back to normal and I have lots of energy. My labs are all within range. My side effect is curly (frizzy) hair, that continues to get thicker. Just saw my oncologist on Monday and she said since I was boring she would see me in four months. Everyone is unique. I feel blessed that it works for me. I know not everyone is so lucky. I’ve had chemo twice previously so I know how hard treatments can be. Kindness always. Sally

[Mimi4times in reply to CLLCalifornia-USA]

Oh, did you lose hair taking Ibrutinib? And it came back like that? My doc says I would not lose my hair???

Mimi in GA

[CLLCalifornia-USA in reply to Mimi4times]

No, it just made my thick hair thicker. It seems to effect everyone differently. A dear friend who is also on Ibrutinib has had hair loss. My hair stylist said I have more hair growth coming in and the texture is different.

I don’t have any comorbidities, so maybe that is why it works well for me. Best of luck. Sally

[Mimi4times in reply to CLLCalifornia-USA]

Interesting!

Thank you.

Mimi in GA

[Farrpottery in reply to Mimi4times]

No you don’t loose your hair and it does change to curly.

Farrpottery

[Mimi4times in reply to Farrpottery]

Ok...

Mimi in GA

[Jm954 Administrator in reply to CLLCalifornia-USA]

Sally, I so wish I had that side effect of the curly thick hair!

[Mimi4times in reply to Jm954]

Bahahaha 🤣

[Bill1288]

Mini4times: I was on Imbruvica 6 months and had AFIB. Was taken off 8 days while my doctors conferred. Treated for AFIB and put back on Imbruvica. Did get petechia and occasional sores on arms. Finger nails brittle. After 1 year on my joint and muscle pain was pretty bad and Dr. reduced my Imbruvica from 420 to 280. So far much better. Have been on Imbruvica now for 18 months.

Bill1288

[Mimi4times in reply to Bill1288]

I already have Afib ... oh dear. I don’t think I will be on such a high dosage. Thank you for your input.

Mimi

[zaax]

I will say a me too. Small things which can be over come, because the good bits are very good.

[Mimi4times in reply to zaax]

Thank you!

Mimi

[Mimi4times in reply to zaax]

👍🏻

[cllady01 Former Volunteer]

Mimi, in your last post I see you were being put on Imatinib

are you on both Imatinib and Ibrutinib?

[Mimi4times in reply to cllady01]

Oh really? I meant IBRUTINIB. I am currently being weened off steroids... and won’t start on Ibrutinib for two weeks.

Mimi in GA

[crystalsky]

When my husband first started it, he did have diarrhea during the day, mouth sores on the inside of his cheeks, and fatigue. The diarrhea did go away, with only a bout here and there, and the mouth sores also went away. Those symptoms were worse the first month. I had my husband take CoQ10, 200 mg. to spare him any muscle or joint pain, and he never had any of that. He also took 10,000 mcg of biotin, and his nails were good.

However, after six months he had a heart attack, went off Ibrutinib, and has not gone back on it. The drug did reduce his enlarged nodes to normal, his spleen to normal, and his blood work to normal, sans his platelets, which bounce around sometimes, a bit below normal. But, he is on Plavix, and it can impact platelet count.

You don't need to look at Ibrutinib as the only drug available to you. If you have difficulties that make your quality of life not acceptable, there are other drugs you can try.

My husband went on the drug with known heart disease, and interestingly, we both agreed if he developed AFIB he would go off of it immediately. Instead, he had a heart attack, and that was the end of that.

Wishing you well.

[Mimi4times in reply to crystalsky]

I do hope he is better. I developed Afib a couple of months ago from being severely anemic. Hopefully all is well there.

Thank you.

Mimi in GA

[bali103]

hi iv been on imbrutinid for three mounths my bloods a fantastic now but im deprest alot vision gets blurd muscles ack but its better than the efecks of the lukimia

[Mimi4times in reply to bali103]

What dose of medication are you on? I get the blurred vision too. And yes, depression is part of it, I get it!

Sunshine from GA