I started taking 420 mg of ibrutinib fourteen days ago. The first ten days were a walk in the park. No side effects. But my day twelve I’d started breaking out in a rash. First just on my stomach and all the way around my back. I looked like I had the chicken pox.
I should mention too that I was coming off 60 mg of prednisone at the time. I finished my prednisone on the eighth day of my ibrutinib. Day nine I was fine. Day nine and ten I felt like I’d been hit by a truck. Headache, fatigue and starting of a sore throat. Then day ten the rash started. Day eleven the rash had spread nearly everywhere including my face. Not down my legs or arm but maybe it just hadn’t gotten there yet. Because I went to the ER for help. Of course these things always happen on the weekend. After they consulted with the on call doc at my oncologists office I was told to stop the ibrutinib and go back on the prednisone until I could see my oncologist.
Very frustrating. Haven’t felt really good since January of this year. I was hoping this was going to be my magic pill. Now I’m afraid my docs going to say that since I had sure an allergic reaction we’re going to have to do chemo infusions.
So I was wondering if anyone has experience the rash. I see lots of diarrhea but no mention of rashes
I also had a problematic rash on Ibrutinib. It developed and got steadily worse for the first few months, so my CLL expert had me pause Ibrutinib for 4 weeks and then restart. However the rash came right back, so I stopped the drug.
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I had this happen to me about the same time after starting imbruvica. I also had a flu shot and prevnar 13 shot on same day i started imbruvica. all over my body and i mean all over. it seemed like a combo or rash/hives petechia. It was mostly gone 3 weeks later. i never stopped ibrutinib.
I am going through this now. I started Imbruvica just 2 weeks ago. On day 10 i got horrible rash on stomach. Then it spread to everywhere but my hands feet and hands ( It looks awful and itches. This was on a Friday nurse and on call dr said to stop Ibrutinib which I just did (although reluctant as I need to reduce lymph nodes surrounding kidney) and she put me on prednisone and steroid topical cream. I am just getting over shingles too so so itchy! Hopefully ending the imbruvica will help rash go away! No other side effects of the imbruvica. Keep me posted!! I have appointment with Cll specialist on weds so will have path forward then.
The main thing is to make sure it’s not shingles. I know that “all over” is odd for shingles. But did they test you in the ER for shingles virus? Shingles antibody levels? I am on vancyclovir continuously during the Venetoclax plus Gazyva combination.
I have had lesions “all over” prior to finding out I had CLL and right before treatment began. I am extremely “immune dysregulated.” I scratch constantly and have had vasculitis, as well as, shingles since CLL began to really accelerated in my body. I even had bad skin infections pop up out of nowhere since I got CLL that landed me in the ER twice. Bug bites are a nightmare; plus all of the gigantic hives that I have had is another problem.
My tumor profile is 11q ATM BIRC3 unmutated IVGH.
But my skin is clearing since on G plus V.
My doctor at MDA did not give me IB plus V because of “my skin”. He said IB has more skin side effects than Venetoclax.
I switched to Acalabrutinib after struggling with terrible blistering rashes while on Ibrutinib (pausing and restarting IB did not help). I've been on Acala for almost a year with great results.
Several points: Acala is not FDA approved for CLL (only for MCL) but doctors can prescribe it off label (Ibrutinib followed the same path). It's an approved Medicare drug. Under Medicare the copay is around $700 / month (5% of $14k) but there are several foundations that will usually cover the copay if you're below a certain income level.
I narrowed down the external cause to Pink Oleander pollen (or something else from the plant). I had a bush on my deck because it smells so good. You may know the leaves of the Oleander plants are very poisonous.
I had to stop Ibrutinib because of rash — it just didn’t get any better even though i lowered dose, stopped, started again. It took a year - then I started venetoclax - it’s been brilliant — don’t despair - there is a plan b.
Thank you so much. I had actually mention that to my doc before we began and he didn’t seem to crazy about it. Said you have to start it in the hospital for constant monitoring in the beginning. Idk. Sometimes living in a small town is not good.
Yes, I did start in hospital— every Monday for the day — I think 12 hours - so I can see that it’s not ideal if you have a long way to travel. This went on for 5 or 6 weeks until I was on the full dose. Touch wood I’ve had no side affects at all - and have now been on it for a year. I wish you very well.
Thank you for the reply. As of now I’ve been in the hospital for three days and it could be several more due to the extent of my rash. My stomach and back rashes are deep purple and the docs afraid if they blister the skin could start coming off and I’d have to be treated as a burn victim. Which could lead to infection. I pray this doesn’t happen. My blessing to you and continued success.
I’m so sorry to hear this — my skin peeled off everywhere including the soles of my feet and palms of my hands. Also my scalp— but — it got better and I had no infection. I wish you very well and hope that this is just a small set back .
I had the exact same thing that you described. All of it. Except in emergency room received in and shot of benedryl and prednisone. Took both oral till itch subsided. It took over a week. Stopped Ibrutinib. Then 6 mo. Later moved and found a doctor who would start me on a lesser dosage. Started every other day with One cap 140 mg of a month all is well then increased to daily. I have been on IB for 2 yrs 9 months now 1 cap daily. At 11 months blood work normal and has staid normal. Lymphatic went a way at 3 months on med. Still have all the wonderful side effects. Sometimes they get a little nagging. I still experience the fatigue. Looking for help in managing them better because I have to work. I encourage you to talk with dr about the lower dosage. Seems we are both sensitive to IB and lower definitely worked for me and my dr. has been able to treat other patients with the same. I was his own trial.
Apparently what I had a reaction to was the Allopurinol they give to offset tumor lytosis (?). Or the sulfa antibiotic I took on the weekends to prevent a certain pneumonia that can happen as cells die. At any rate I have lost a lot of confidence and don’t know where to go from here. My husband wants to search for a new team. Scared and frustrated.
Oh that does sound frustrating. I am so sorry. I might agree with your husband it couldn't hurt to get a new perspective or opinion. I will keep you in my prayers. I am single so I pretty much depend on God and my own research. Health unlocked has been a bundle of info. I hope you find some answers soon. Please keep me updated.
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