Side effects from Imbruvica

[farber]

Hello, I’m on Imbruvica for almost 3 years. Have some side effects: UTI, palpitation in my heart, gain wait, broken nails ( not growing), noise in my head. Did anyone experience the same side effects?

[annmcgowan]

Hi I am on ibrutinib L, 2.5 years in now. I have tinnitus and broken nails and sometimes have swollen tongue or mouth ulcers. These are intermittent and manageable.

Ann

[Jooby59]

I have been on it since last September and have had various side effects which come and go. Mouth ulcers - mainly kept under control by using Oil of Oregano twice a day. Broken, split nails - nothing seems to make them better. Eyesight deteriorated - on second lot of new glasses since starting medication. These definitely are connected to Ibrutinib but I find I have to be careful not to blame every ache, pain or strangeness on them! But it’s worth all the side effects for the fantastic results I am getting.

[morepork]

Hi Farber

I've been on Ibrutinib about the same amount of time as you and I have the hair on my head breaking off and falling and nails broken and brittle, and thinning skin and I'm told its due to lack of Keratin, yet another type of protein. I'm assuming there is no relation to the BTK being inhibited by Ibrutinib. Oh I also have "benign" A/Fib, and various other mostly manageable side effects.

[Jacksc06]

Hi I have been on IB for just over a year. I had issues with mouth ulcers and as Jooby 59 said oil of oregano helps with that. I take Biotin daily and this has stopped my nails splitting and also helped with my hair. Constant tinnitus which can be very annoying but low background sound, radio TV etc distracts me from it. Best regards.

[LinnyPooh]

I have been on Ibrutinib 14 months. I also have brittle nails and my hair is suddenly curly. I haven't had curly hair since the last time I paid to have a perm! As with others, I'll deal with it since I'm getting excellent results. Always waiting to see what the next side effect will ge.

[farber in reply to LinnyPooh]

Thank for your response. My blood test also Ok. But this side effects also bother me a lot. What is dose for IB are you taking. I ‘ m taking 420 mg.

[LinnyPooh in reply to farber]

I am also on 420 mg.Your side effects are definitely more debilitating than mine. I don't have any advice for you. Just know that many of us here understand and are here for you to talk to and/ or vent

[ClassyLady3 in reply to LinnyPooh]

I also am getting curly hair and am on my third month of treatment

[hhk50]

I had a few of yours, not all. Plus a basket of other ones too. The important point is that I had my bloods done this week and everything is normal. I would rather have the side effects than be dead.

[Cindi73]

I've been on ib since feb 2018. I've had the problem with Uti, heart flutter. On Metoprolol for the heart flutter. Since dosage has been reduced I'm not getting the Uti and joint pain. Wishing you the best. Cindi

[farber in reply to Cindi73]

Thank you for your response. Which doses of Imbruvica you are taking now.? I’m taking 420 mg.

[Cindi73 in reply to farber]

I'm taking 140 mg. 1 capsule a day for the past year. Cindi

[bwcw]

I've been on Ibrutinib a little over 3 yrs. and have all of those symptoms. The weight gain is the hardest. My cardiologist has the palpitations under control.

[Mumu1 in reply to bwcw]

Hi bwcw, my experience sounds a lot like yours. I’m on Imbruvica for about 2 1/2 years. I gained almost 25 pounds since then (up from 140). And nothing seems to stop the gain ... It feels horrible plus it’s not healthy either. Did you get any suggestions on how to loose at least some of the weight?

[paulabs]

On ibrutinib 420 mg for 33 months. Hair started growing in curly at 9 months and all blood numbers reached normal limits by 12 months. Throughout I have had heartburn blamed on ibrutinib, successfully treated with 40 mg omeprazole, and weight gain reversed with 3 months of calorie restriction. Also, from the start formerly strong nails have been brittle and prone to splitting. That has improved with 2500 mcg biotin and weekly painting with NailTek 5 in 1. From the start there has also been easy bruising and thin skin, but add it all up and compare to how well I feel-- and it is definitely something I can live with.

Paula

[Cklo in reply to paulabs]

Best of luck and I just started it.

[farber in reply to Cklo]

Good luck

[farber in reply to paulabs]

Thank you

[Cklo]

Yes I have muscles in my arms hurt. My ears felt plugged just left one.

[DelrayDave]

Yes, unfortunately these are common. Some I have gotten used to, like the ears ringing. The afib I think I fixed with a procedure called cryoablation. The nails are a bit better with biotin, but I take inly 1000 mcg. a day. The drug has kept the CLL in remission now for 5 years and a half. So I figure it's worth the side effects.

Do be aware there are alternatives you will read about on this site. Acalabrutinib may reduce the heart issues. Venetoclax plus obinituzimab is a very promising one-year regimen that gets you off everything and seems to work well for many.

Good luck.

David

[farber in reply to DelrayDave]

Thank you David

[Cklo in reply to DelrayDave]

Thanks Hope we all do well.

[Canuck901]

Imbruvca is a good drug it does keep CLL in check, most people tolerate it until they cannot handle the side effects or it stops working. Depends on the person but usually toxicity builds up over time.

[Hectanooga]

Yes. I have been on Ibrutinib for a year and I have many adverse effects. Weight gain, headaches,joint and muscle pain, extreme fatigue. I had my dosage reduced to try and combat these disabling side effects and did experience some relief bit the weight stays on even given the fact that I eat less now than pre CLL.

[country76]

I took Ibrutinib for 14 months. I made a list of 16 side effects. It was the bilateral knee pain that pushed me over the edge and I changed to Alacabrutinib.

So far so good. I can actually walk again and my blood pressure is coming down slowly.

I am very greatful to be alive with normal labs and Ct's.

[ladyprescott]

I have so many symptoms from IB. Hair that I could have done in corn rows it's so curly, unruly, wiry, awful. Bruising that is so embarrassing. Weight gain that I can't get off. Back to not feeling good again. Now have heart irregularities and will be seeing my cardiologist in a couple of days. Cramping that sometime hurts so bad I can't stand it. My numbers still are not in the normal range after 2+ years of taking IB. I may ask my oncologist about Alacabrutinib. So, this stuff is keeping me alive with a lot of misery.