Ibranib side effects

[GD-K]

I've just started taking ibrutanib and feel dreadful. I guess this will pass but I'd be interested to know how long. Anyone had a similar experience.

[lankisterguy Volunteer]

Hi GD-K,

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We have lots of past discussions here about Ibrutinib side effects. Here is a good summary from the CLL Society:

cllsociety.org/2016/06/top-...

SNIP: The irritating side effects that sometime occur with ibrutinib including fatigue, heart burn, diarrhea, and arthritic symptoms typically are noted more at the beginning of therapy. Interestingly, for most patients, these tend to resolve quickly with time and are often non-existent within 2-3 month. In general, older patients tend to have more side effects such as this with ibrutinib, as well as bruising. Why older patients are more likely to have side effects and actually discontinue ibrutinib is uncertain and warrants study. However, this is not isolated to ibrutinib because virtually all other therapy used in the therapy of CLL has a similar profile.

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Len

[MaxSmart]

There are now medications very similar to Ibrutinib, but with less side effects. These are Alcabrutinib and Zanubrutinib.

[Zia2 in reply to MaxSmart]

I could've chosen Acala but CLL doc said it hasn't been approved near as long as Ibrutinib and they aren't long term studies. SHe recommended I try Ib first and see if it worked and I can tolerate it.

[MaxSmart in reply to Zia2]

In my opinion what your doctor said is technically true but the consensus is that Ibrutinib has serious long-term side effects for many people.

[Zia2 in reply to MaxSmart]

Are you referring to our heart? Is that after taking it a long time? Still learning....... thanks

[MaxSmart in reply to Zia2]

Both medications are BTK inhibitors, but most BTK is good and should not be inhibited. Ibrutinib inhibits too much BTK and that’s what causes these various side effects. Heart is the most dangerous but there can be other uncomfortable side effects too. Second generation BTK inhibitors like Alcabrutinib are more targeted so there’s less side effects.

[country76]

The good part is Ibrutinib saved my life. Gave me a normal CT, reduced spleen to normal size, brought blood work to normal range except a few to almost normal, borderline A1c to normal.

Some people don't have any side effects, I am sensitive to drugs. I could control some of the side effects with different products. 2 brazil nuts daily for mouth sores, mag/phos salts and warm water and compresses for cramping, biofreeze and small amount tart cherry juice for knees. After a while didn't help much for cramping and knee pain.

With Ibrutinib I experienced: Hair breakage, optical migraines, red blotches on face, mouth sores, constipation and diarrhea, petichia, joint pain (especially knees), severe cramping (neck, abdomin, back, shoulders, thighs, arms), fingers and hands locking up, bruising, edema in legs and feet, rash all over legs, high blood pressure, splitting nails and skin next to nails, dryness especially feet, sensitive feet, weight gain, cold sensitivity, thyroid meds stopped working.

I had to switch to Alacabrutinib. So far in 3rd month, reduced bruising, blood pressure reduced however still on meds, some spitting nails, some dryness, still have rash. The minute I started Alacabrutinib cramping and knee pain stopped.

I am so thankful for these drugs.

[Zia2 in reply to country76]

My gosh. How long did you take Ib?

[country76]

I took it for 14 months.

[Zia2 in reply to country76]

You're tough. Glad you feel it worked and glad you are feeling much better, w fewer side effects.