Ibrutinib week 1 - gout?

My first week on Ibrutinib has gone fairly well - tummy upset on the 3rd day only when my weight dropped to below 8 stone. It’s stabilised now and I’m enjoying food again and no longer feel constant stabbing pains and cramps in my abdomen... all this in just a week! Fingers crossed I continue to respond well to the Ibrutinib.

The haematology nurse phoned yesterday to say my recent blood test was very good. Last week before starting the Ibrutinib it was: White blood count 11.5, lymphocytes 8.6, neutrophils 1.8, platelets 160.

This week: White blood count 8.6, lymphocytes 6.7, neutrophils 1.6, platelets 242. Uric acid and liver function both normal.

My only worry is that my knees started feeling spongy, tight and painful yesterday - especially the right one which has swollen to about a third larger than it would normally be and I can’t bend it easily. Is this a symptom of gout and does it wear off after a while? I’m on antibiotics, antivirals and allopurinol which is for gout prevention. I don’t know if I should just wait until my appointment next week before saying anything - I’m so afraid of being taken off this miracle drug!

Has anyone else had similar symptoms of swelling joints or bone ache while on Ibrutinib, and does it wear off? Thanks so much for your feedback and my apologies for not replying sooner to all the responses from my initial post last week - it’s been a bumpy time, but I’ve just written a thank you in that post to everyone.

Ruhi x

6 Replies

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  • Joint pain is common. Swelling I don't know.

  • Yep, as Justasheet says joint pain is common and my painful joints always swelled too. For me it was intermittent, could come and go very quickly but took about 18 months to really stop.

    Very painful and uncomfortable but hang in there as it does get better.

  • All normal results

  • Allopurinol is not for gout, it is to prevent tumor lysis syndrome specifically Hyperuricemia, a build up of uric acid and other things in the blood... its used a a preventative.

    Joint pain in not uncommon, for most patients it is transitory, in some cases, it reaches a point where treatment is stopped...

    Be sure be stay very well hydrated for the first few months...

    ~chris

  • I will add to Cllcanada (Chris' post) by saying: Stay hydrated always. :-)

  • I have been taking Allopurinol for year's. It was prescribed for episodes of gout that I suffered. Thankfully I have not had an episode for year's. I guess it's not just for gout.

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