Uric Acid Blood Levels : I have been on... - CLL Support

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Uric Acid Blood Levels

CDavis profile image
13 Replies

I have been on Ibruitinib since 2020 and my uric acid levels have been on a steady incline. I have no symptoms of gout and my diet and medications have not changed since 2020. Could Ibrutinib be the culprit of the increasing uric acid levels?

Has anyone needed a prescription for gout medication even though they do not have symptoms of gout.

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CDavis
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13 Replies
terryI_uk profile image
terryI_uk

I was prescribed alluporinol at the same time as ibrutinib when on treatment in2015-18. I think increasing uric acid is a common problem with ibrutinib, Terry

DylanPxxx profile image
DylanPxxx

Ibrutinib kills your cancer cells. The dead cancer cells convert into uric acid and accumulate in your blood. If the volume is too much for the blood to wash away, they will accumulate in your joints, especially knees and feet. This is a very common side-effect of Ibrutinib and other cancer meds.

TerrySAdams profile image
TerrySAdams

I've been on IB since 2018 and recently started to suffer badly with Gout. I agree with Dylan, a bad side effect. My GP has prescribed Allupurinol. I get Gout flare ups, there are meds your GP can prescribe. Hope you get treatment that works. Terry (A), from UK. Best Wishes.

Alpha66 profile image
Alpha66

I've been on and off allopurinol ever since starting Calquence about a year ago for the same reason.....highish uric acid again no gout symptoms.

S

Cindi73 profile image
Cindi73

Do you get any bone pain? Like a spot gets tender on the bone that runs from your elbow to wrist? I do and was told it was gout induced from ibrutinib. I'm on Allopurinol for it. I've been on ibrutinib since 2018.

SeymourB profile image
SeymourB

I had elevated uric acid at times before, during, and after treatment. I have no obvious gout symptoms. My treatment was a triple therapy - a trial of Pirtobrutinib, Obinutuzumab, and Venetoclax, which caused a very fast die off of a lot of cells. My ALC wen from 88K to 2K in a week. I did have a laboratory TLS (Tumor Lysis Syndrome) the first several days on 1/10 dose of Obin, and daily Pirto. I had to skip the Day 2 dose of Obin due to an infusion reaction. My LDH peaked at 1701U/L 2 days after start of treatment. So I had a really fast, massive die off.

The trial had mandated 300mg allopurinol to cope with the uric acid from the die off which could cause TLS if uric acid is > 8.0mg/dL. It had been as high as 8.9mg/dL just before treatment. But after a cycle or 2, they stopped the allopurinol, saying that it's no longer needed, because the big die off is over. Yet, I still had Uric acid above the normal range, several times (I was tested every 2 weeks), so they prescribed 100mg Allopurinol. Eventually, I stopped even that, but still have occasional values as high as 7.6.

I noticed that M.D.Anderson's range was 3.4 - 7mg/dL, while Quest Diagnostics used 4 - 8mg/dL. Probably due to different instruments.

I did consciously cut back on red meats throughout treatment, because I was afraid of developing gout and associated kidney damage. Now that treatment is done, I only get tested every 3 months. I do still resist red meat, but indulge perhaps once a week.

From what I've read, the actual test for gout is a urine test that looks for actual uric acid crystals. I've had a few, and have never been positive for crystals.

So, my doctor at M.D. Anderson did not think that any of the 3 drugs I was on continued to kill enough cells during treatment. I was even uMRD6 in blood after only 4 cycles, and in marrow and blood after 7 cycles. They assumed the uric acid was due to my own biology and diet.

Even so, I do see a case report of a gout flare after 4 cycles of ibrutinib for CLL, despite allopurinol:

journals.sagepub.com/doi/10...

Acute gout flare of bilateral first metatarsophalangeal joints due to ibrutinib use in chronic lymphocytic leukemia

Case Reports> J Oncol Pharm Pract. 2022 Mar;28(2):442-444

(abstract only)

So I think BTKi monotherapy may allow enough continuous die-off, and combined with diet and unique patient biology, uric acid can continue above normal. Uric acid chemistry is complex. I think a consult with a nephrologist might be a good idea for additional testing.

=seymour=

mnmnewtons profile image
mnmnewtons

YES. I "overdosed" on Venetoclax and experienced serious cytokine release syndrome. After admission to the hospital and appropriate treatment, I was released and returned home. In a week or 2, my right knee swelled up and was drained of a gout like fluid. It was determined that the fluid was pseudo-gout. Thanks to you the mystery is now solved.

lankisterguy profile image
lankisterguyVolunteer

Hi CDavis,

You have several very useful responses and if you want to see more- check the box on this page labeled: Related Posts

*High Uric acid levels

*High level of uric acid

*Higher than normal uric acid

*Venetoclax: The Final Stretch……Do You Have A Uric Acid Problem

*Knee pain and swelling. Uric acid?

<

Len

Villager profile image
Villager

I was successfully talking Ibrutinib (Imbruvica) for eight years until it no longer effectively treated my CLL. Began the ramp up process for Venclaxta and experienced the typical uric acid spike along with severe gout. Started Allopurinol and am still taking 300mg once daily. Watch diet, limit alcohol and red meat. Occasional but not severe gout episodes after 24 months. CLL in remission with Venclaxta.

JDG45 profile image
JDG45

Been there like you and gout in both big toes. Not fun.

My uric acid shot up just after the Acalabrutinib/Venetoclax ramp up in the Majic trial. I think my downfall was not drinking enought water. Colchicine was not tolerated by my stomach so I stopped after the first dose. Maybe I should have continued. Got a shot of steroids in one toe joint but the gout subsided in both toes about the same time. Now on Allopurinol for life...which I don't like the thought of.

Did I mention drinking more water?

Mahere profile image
Mahere in reply toJDG45

Hi All,

I recently got gout (August). My hands (fingers) swelled up badly - seriously painful. Had minor soreness with my toes also, but the hands were the major issue. Went to my GP and he sent me to A&E where I had to have my wedding ring sawn off!. He put me on a number of meds (anti-inflamatory, steroids, colchicine) which sorted things out for me. I am now on Allopurinol (300g daily).

I had been on Ibrutinib since ~Nov 2022 and I had major bone pain (arms, shoulders, neck), bad lower back pain (arthritis like), cramps in my legs, chest, upper back muscles and general unwellness. I went to the physio for the back pain who put me on exercises and to the GP for the general unwellness, but little could be done for it.

My consultant has put me on Zanabrutinib (Brukinsa) - since August. So, far - it seems to be agreeing with me - most of the sympthoms have gone away or eased significantly. I feel normal again. So, I'm point to blame at Ibrutinib for sure.

antonb profile image
antonb

do you drink more than two liters of water a day>?

CDavis profile image
CDavis in reply toantonb

Generally, I drink 2 liters daily. Sometimes a bit more. And I have been doing this for years. Currently I am reducing foods that are higher in Purines to reduce the Uric acid levels. But the dietitian said this will only account for 20% drop in blood levels. But 20 % drop is better than going up. I go for repeat lab work this Monday but it will be too soon to see if the diet helps because I just started this last week. I cannot take Allopurinol, as we discovered that in combination with Ibruitinib I react with a severe body rash. We tried this twice with the same effect. I was on Prednisone and stopped the Ibruitinib for several weeks until my body settled down. I am not particularly keen on going on any other type of gout medication just because of the long list of potential serious side effects.

I do not suffer from gout pain, I am trying to be as proactive as I can. My CLL physician wants to start me on the gout meds probably to keep my kidney functioning at a decent level ( that's my guess).

Thanks for your message.

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