Ibrutinib week 1 - gout?: My first week on... - CLL Support

CLL Support

22,370 members38,481 posts

Ibrutinib week 1 - gout?

Ruhi9 profile image
6 Replies

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

Written by
Ruhi9 profile image
Ruhi9
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Justasheet1 profile image
Justasheet1

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

Jm954 profile image
Jm954Administrator

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.

richutchens profile image
richutchens

All normal results

Cllcanada profile image
CllcanadaTop Poster CURE Hero

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

DrLV profile image
DrLV

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.

You may also like...

Is Two Weeks Off Ibrutinib Risky?

hernia surgery and will be off ibrutinib for one week before and one week after surgery. Is it...

Ibrutinib-day 1

I just started Ibrutinib treatment as a first line treatment. My first dose was yesterday and I...

Cycle 4, Week 1 Update from OSU Trial

October 11. Hurray! My white blood cell count is low, as are my neutrophils, red blood cells and...

Maybe side effect after 2 weeks on Ibrutinib?

I posted this morning that I just hit two weeks on Ibrutinib with no side effects. Now last night I...

Ibrutinib - 8 months on

a stone in weight. Regular blood tests have shown my white blood count eventually coming down and...