I’ve just finished my tenth year since my Stage IV diagnosis of CLL and my questions today are about the incidence of gout in patients who have been in various forms of treatment. Early on, my Uric Acid was only an issue in case that tumor lysis syndrome was an outcome of the treatment. Later on, TLS became a more everyday issue especially during my time on Ibrutinib or Acalabrutinib when I think it became a much more acute problem. I went for about 4 years without a Uric Acid test during which time I think I started developing gout issues which really became a serious problem during IBTN, it got so bad that I had to have surgery to remove a tofacious gout nodule from the middle of my right foot which was also packed with CLL cells.
When it was clear I was going to have to have surgery, they needed my Platelets at 50 or above which was a problem because of my history with ITP, as a they had been running in single digits to teens. I had a 5 course treatment of IVIG which got the Platelets up high enough, but it also triggered a very serious case of TLS. So I got the Platelets up, had surgery and within a week was back in the hospital with a HgB of 5 because so many red blood cells had died with a very serious case of hemolytic anemia. It was my greatest brush with death in the prior 8 1/2 years. I ended up having to have a complete blood transfusion and after which I started on Venetoclax, which began with 6 monthly treatments of Rituxan as well as bi monthly treatments of IVIG and now 19 months into it, I have blood test results of a normal human being, with one exception, Uric Acid, which is causing recurring gout problems in my feet mostly.
I’ve tried to treat with high dose allopurinol, 400 mg a day, and I only lasted a few weeks on it and had to take it back to 100 mg a day and ultimately had to stop it, so I started Uloric at 40 mg and I lasted but 10 days on that drug before all hell broke loose in a variety of ways, but luckily I didn’t have any cardiac problems like I did while on Ibrutinib.
So, I’ve decided that with 5 months left on Venetoclax, I am going to roll the dice with the Uric Acid reducer drugs hoping that when I stop Venetoclax the cell death problem will moderate and won’t be so much of an issue. 100 mg of allopurinol a day seems to keep my Uric Acid at just about 7, but I can’t get to 5 without a lot more. In the end, its just easier to deal with the gout flare than it is to try to fix the uric acid issue, for me at least. This is a thesis I am working on with my Oncologist and Rheumatologists at Dana Farber.
So, to get to my question, what is everyone’s experience with increased uric acid levels while on later stage treatments for CLL, have you had to be on ongoing Allopurinol or alternatives, has it caused you to have gout and if so, how serious has it been, i.e. how odd has my need to have surgery done. Sorry for the length of this post but its surely been a tough journey during which gout has become one of the most serious outcomes and surely greatest cause of concern!
Thanks in advance for offering your thoughts.
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KevinCLLITP
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Hi Kevin, I’m sorry there’s been few responses but this may indicate that this isn’t a usual problem in those circumstances. I haven’t heard much of treatment induced late onset gout much over the years. Do you have any other joint issues?I’m just on the final run of Venetoclax treatment and thankfully gout hasn’t been an issue (other serious arthritic problems but not gout).
I’m wondering if you’re pre-disposed to gout anyway? My husband is on daily allopurinol and I’ve seen many times the agony of a gouty flare.
Hope you can find some resolution to this. You’ll be aware of the benefits of cherry juice/extract and all the usual dietary recommendations I expect.
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If you haven't considered severe dietary restrictions, please start there. Medications can cause side effects, especially as doses increase. And remember, if the purines that cause uric acid formation aren't freely available, the problem doesn't occur. It's hard to drastically change your diet/avoid alcohol, but as you feel better and you notice flares from food occurring, it's easier. I'll also mention that at least some people have metabolic based disease states regress or at least become easier to manage when they lose any excess bodyfat/weight. Diabetes, cholesterolemia and other dyslipidemias, high blood pressure, often respond to dietary changes. Gout is included.
I take tart cherry extract (capsules) 1500mg twice daily. It has resolved what was formerly an elevated uric acid level. There is some literature to support it’s utility (see a link below) but I can speak from my own positive experience.
Prior to my CLL diagnosis and before being treated with Obinutuzumab and Venetoclax, I was on 300mg Allopurinol once daily for uric acid/gout, and 20mg omeprazole once daily for acid reflux disease. I continued on both drugs during the trial and afterward even unto the current day.
With regard to gout, kidney stones, and acid reflux, I was at my worst just before treatment and at the beginning of treatment. Everything seems to have gotten better now that my CBC counts are normal and my uric acid is kept stable in range with the allopurinol. I still get occasional kidney stones.
I also am very vigilant to drink an adequate amount of water daily, and I keep foods with gout influencing purines at a minimum especially mushrooms, shrimp, asparagus, and alcohol. Although I get a mild pre gout aggravation occasionally, I have not had a bout of the extreme pain and inflammatory type that was common prior to the CLL treatment.
I did some online research regarding gout and CLL. I found that it is common for those diagnosed with CLL who are predisposed to gout and other inflammatory responses to have increased symptoms, and more so with accelerated lymphocyte counts. I recall that the medical publications indicated that with high WBC, that there was more uric acid and cytokine activity in the peripheral blood. From reading I also concluded that these measures would not be approachable with a general practitioner for two reasons. The first reason being that general practitioners are not capable of testing cytokine levels. The second reason being that the high levels of uric acid is relative to the apoptosis of abnormally high numbers of white cells which can fluctuate erratically in CLL in relation to when a lab sample is drawn. It became apparent to me that the discussion was more for a research setting.
Thankfully now that I am uMRD, I take the daily 300mg Allopurinol and 20 mg omeprazole with acceptable results. However, I did have conversation during the treatment era with my doctors in the event that the symptomatic conditions were to persist. In those conversations there was speculation that it may help to increase the Allopurinol to 400 mg by administering 200mg morning and night, and to double the omeprazole in the same fashion. With regard to gout, there was also talk of replacing the allopurinol with Febuxostat/Uloric which would have occurred after the CLL treatment ended. Some studies show that the kidneys utilize Uloric more efficaciously than with Allopurinol.
It is fair to note that the trial that I was in required allopurinol to aid in TLS management, therefore, substituting Febuxostat at that time would have complicated the drug administering schedule due to required additional authorization.
It is my view that what helped me the most and with the least effort was to drink plenty of water.
I hope you get the gout under control, as, it can be terribly painful.
Hi kevin. I started Rituxan for six months followed by Venetoclax. I did have a uric acid/gout issue at the beginning of my rituxan. I took one prescription of allopurinol, but I really didn't feel well taking it. So I switched to cherry juice, which worked great after a few days. I gradually just quit taking it and have not had an issue since.
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