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CLL Support Association
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Gout

Hello to all. A little background.I am in a clinical trial, at MD Andersen , that combines Ibrutinib with Venentaclax and Alpurinal. So far everything has been unbelievable , My wbc went from 414,000 to 4.2 and everything else is at or well within the normal range. With that being said, recently,I have experienced two severe attacks of gout( never had it before) on my left big toe. My Uric acid levels are well within range .After the first episode,I've been watching my diet to element any contributing factors (red meat, sugars, high corn starch products, cheeses, etc)as well as almost floating from all the water I'm drinking .My Dr says that this has happened many times before and has prescribed a course of steroids (can't take ibuprofen or similar pain killers on the Ibrutinib)since the Colchicine( they prescribed) only provided temporary relief.

My question is, has anyone else experienced anything similar ? I'm concerned about starting the steroids as I don't want to be "tethered" to them in the future as this trial runs for two years.

Any feedback will be greatly appreciated.

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Not in treatment at this time, but do have gout. I have taken Allopurino 100mg for years. No issues. Was on steroids as well but was glad to get off those. Was just throwing that in and it was not a option? STAY STRONG J.R

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Sorry , in reading your posting again. I see you mentioned Alpurinal. Maybe this is Allopurino. Just noticed it. STAY STRONG J.R

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The worst pain I ever experienced, began in my lower left leg and moved inexplicably to the right foot and lower leg. I was on allopurinol at the time and within a week it all disappeared and has never returned.

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I completed the 16 cycle OSU trial with obin/ibrutinib/ventoclax. Took allopurinol in the beginning, but once CLL load was lower, this was dropped. I've had what I'd call roving joint pain. Drinking more water and diet has helped. My uric acid was high, but not crazy (6.5-8). I have had less pain as time went on. I'm 6 months post trial.

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Thank you!

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