Tophaceous Gout and CLL Drugs

[KevinCLLITP]

I have had CLL for nine years and have been in nearly constant treatment except for about 30 months in the 2016-2018 time frame. In the past several month I have had problems with suspect masses growing in each of my feet between the toes, but not on the joints. After x-rays, MRIs and PET Scans, I ended up in surgery a week ago and had two masses removed that were substantially larger than you would expect would fit between those, 3.5x2.5x1 cm. Toes had splayed significantly. In the other foot I have same between toes 1/2 and 4/5, as well as suspect tissue around the ankle and on the achilles.

The past two years I have been on Ibrutinib, and two of its derivatives, then nothing for about six months at which time I had a serious case of hemolytic anemia after which I was put on Venclexta and 6 rounds of Rituxan.

Pathology reports came back with a diagnosis of tophaceous gout, which we now think has migrated to a couple of other places on my body, like my ear lobe of all places. Checking my blood for Uric Acid prior to my bout of anemia was scant, at best, but has been relatively consistent since them.

I noticed on the prescribing information of Venclexta there is significant mention of gout and problems like this, and I honestly haven’t gone back to check Ibrutinib, but these things all started with what our local ER classified as bouts of cellulitis, which was plausible due to the potential for Ibrutinib to cause infections throughout the body.

So, my question or request is, for other’s who are in a situation similar to mine and are suffering from gout, either in bone or in tissue. I’d love to know about your occurrence and management, etc., and whether gout is an expected outcome of these drugs and we should have been checking uric acid levels much more closely while on them.

Thanks.

[SofiaDeo]

The allopurinol used in Venclexta treatment is usually only during induction to prevent Tumor Lysis Syndrome. I am unaware of "gout" as a side effect otherwise. But both ibrutinib and venetoclax are fairly new, so if long term use causes increased uric acid levels overall, this side effect may just recently started being reported, like you are reporting. We know aspirin can affect excretion of uric acid, perhaps these drugs do too.