Follow up on allopurinol: hello everyone I was... - CLL Support

CLL Support

23,643 members40,379 posts

Follow up on allopurinol

GettinThruIt profile image
9 Replies

hello everyone

I was reading a post by someone who was discussing allopurinol and gout. I’ve been taking it with Imbruvica for a few years but after reading that thread im wondering if anyone can tell me if it’s necessary to take it forever like im gonna be taking Imbruvica forever ? Are there long terms issues with allopurinol ? Thanks

Written by
GettinThruIt profile image
GettinThruIt
To view profiles and participate in discussions please or .
Read more about...
9 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi GettinThrult,

In general, I believe that allopurinol is usually used for short period whenever our hematologists expect to have many CLL cells dying at one time. And I think there are some side effects that make it uncomfortable for long term use. Often on BTK or BCL-2 inhibitors, when we reach a stable level of CLL cells, there is no real need for it.

>

You can read the past 256 discussions on allopurinol here: healthunlocked.com/cllsuppo...

>

Also please look for the box on this page labeled: "Related Posts

*Who is taking Allopurinol with Imbruvica

*Allopurinol question

*Allopurinol question

*How many milligrams of Allopurinol were you prescribed?

*Rash with Imbruvica & Allopurinol

>

Len

Suzie42 profile image
Suzie42

I've been taking Allopurinol since 2014 before CLL. I sill need Allopurinol to keep gout at bay, but have yearly uric acid blood test to make sure dose is correct.

bluehydrangea1 profile image
bluehydrangea1

My husband is starting ibrutinib next week and his dr wants him on the allopurinol for a few days before starting treatment and then 2-4 weeks total.

Mtk1 profile image
Mtk1

I’ve been taking 300 mg of allopurinol for about 30 years now, well before starting acalabrutinib, as far as I’m aware it’s well tolerated for long periods, and I’m evidence of that. But everyone is different.

Dave.

Its provide to prevent gout during the initial de-bulking of the CLL cells. As the CLL cells die they release Urich Acid into the blood stream. Once your lymphocytes are down to a reasonable level you can stop it (check with your consultant) I never took it, as it actually gave me gout...

BigDee profile image
BigDee

Hello GettinThruIt

I have been on/off allopurinol 4-5 times. My doctors monitored me closely and longest period of use was couple of months. Doctors said long term use of allopurinol was not advisable, so as soon as my uric acid stabilized, I was taken off allopurinol.

SeymourB profile image
SeymourB

GettinThruIt -

It shouldn't be necessary long term for CLL. But people without CLL do develop high uric acid and gout, often as they get older. Some gout is diet related, but there's also genetic causes:

healthline.com/health/gout/...

But I don't see genetic gout tests when I search for them. I think they just ask if siblings, parents, aunts, and uncles, grandparents, etc., have gout.

As far as safety and long term, it's best to review the package insert instructions:

accessdata.fda.gov/drugsatf...

=seymour=

Tajie profile image
Tajie

Like many others, I was on Allopurinol for a few months after starting therapy with Brukinsa. After a few months, my oncologist had me stop taking it.

skipro profile image
skipro

It's typically used short term to prevent kidney damage by the uric acid released when large numbers of CLL cells die rapidly in treatment.

Do have any other reason to take it? Gout?

History of uric acid kidney stones?

Good luck and God bless

Skipro

Not what you're looking for?

You may also like...

Rash with Imbruvica & Allopurinol

My 70 yo husband has been on Imbruvica (420) & Allopurinol for 3 months with little side effects...
TN2FL profile image

Allopurinol

When I 1st started taking ibrutinib I was prescribed 300 mg allopurinol. But as my initial cramps...
cartwheels profile image

Do most people on Imbruvica have to take allopurinol also?

I have been on IB for almost 3 months and I really don’t like taking allopurinol and I’m wondering...
narl profile image

Rasburicase/Allopurinol

Hi, I am in the first week of ramp up of Venetoclax. I was hospitalized for 2 days for the first...

Bloodwork on imbruvica

Hi all!! Just got my bloodwork back My WBC WAS 230,000 On imbruvica for three months My WBC IS...
littledab profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.