Ibrutinib + Allopurinol

[sohale]

Hav been reading this great forum for years, now I have an opportunity to 'give back'.

For my CLL I recently started using Ibrutinib + Allopurinol (Zyloric) to deal with the consequent excess uric acid. After 12 days of use, with no symptoms, on day 13 I developed a fever with a body rash. I was admitted to hospital with Steven Johnstone Syndrome, a reaction to the allopurinol (one of the known drugs to cause the reaction). My haemotologist intends to prescribe an alternative to allopurinol, but Ibrutinib will continue.

Lessons learned. Anyone, particular those of Asian descent, prescribed Allopurinol should ask for the "HLA-B*1502" screening test before starting treatment, which will hopefully confirm, or otherwise, the use of allopurinol.

[Jm954 Administrator]

Are you also taking any anti-epileptic medication by any chance?

Interestingly the HLA-B*1502 has an increased frequency in people of asian origin but it's also found in other ethnic groups including caucasians. The interesting part is that the allele doesn't have the same association the Steven Johnson syndrome in caucasians.

What an awful experience for you with Steven Johnson Syndrome as it can be very serious. I had a dreadful rash on allopurinol which was triggered by the sunshine (I was on holiday in Cuba) and only affected the parts of me exposed to the sun. I stopped the allopurinol and it went away thank goodness.

Hope all goes well from now on

Jackie

[Spark_Plug in reply to Jm954]

Just an asterisk point, however, "The Caucasian race (also Caucasoid,[a] Europid, or Europoid)[2] is an obsolete racial classification of humans based on a now-disproven theory of biological race.[3][4][5]" [en.wikipedia.org/wiki/Cauca...]

[Bobby9toes]

When I started on my SLL journey about a year and a half ago, my doctor put me on 2 Calquence and 1 Allopurinol a day. Like you, I did fine for a few days with only a headache that went away with coffee until the headaches would not go away and I developed a rash and double vision. Long story short, I ended up in the emergency room via ambulance. It turned out to be the Allopurinol. I am now taking 1 Calquence a day and doing great.

[skipro]

Seems like Ibrutinib alone acts slowly enough not to cause tumor lysis syndrome and thus I question the need for Allopurinol.

With both my treatments, FCR and later V O my ALC dropped from 225,000 to a few thousand in a few days so Allopurinol made much more sense.

Good luck and God bless

Skipro