When I 1st started taking ibrutinib I was prescribed 300 mg allopurinol. But as my initial cramps and aches faded after a few weeks I never took the drug as I did not want to take to many tablets. I still get periods where I get aches cramps etc but I can deal with that. I should I take the tablets how many on here have taken them and do they do any good.
Allopurinol : When I 1st started taking... - CLL Support
Its unwise in my opinion to change your treatment when on Imbruvica (ibrutinib), which actually has a delayed lymphocyte spike usually after about 2-4 months. Your uric acid build up could be delayed..
Compliance is important, if you have concerns about the allopurinol it should be discussed with your CLL doctor, before you stop prophylactic drugs...
I'm not going to stop ibrutinib if that what you mean. The appolurinor was given in case I needed it .i decided that my side effects were manigible with out using it
Alupurinol builds up in your system btw so shouldn't be used like an as and when pain killer
The concern is a rare but real event called Tumor Lysis Syndrome, when the blood chemistry, due to cell die off can cause a build up of uric acid and other chemicals in the blood.
This syndrome can be fatal.
I have just come off 7 months of allopurinol, now that my absolute lymphocyte count [ALC] is in a safe range for TLS.
Thanks I'm having monthly checks and nothing has been said to me. As I said they were given in case I felt the need to take them . How would I know if I had tumour lysis. Thanks for reply
High uric acid levels in the blood. Tumor lysis is a silent killer...
Allopurinol is used to treat gout, but CLL treatment is a very different situation.
Hi Cartwheels--I don't understamd why your doc said to take Allopurinol if you felt you needed it. What symptoms did the doc tell you would make you feel like you needed to take it? I was given the Med during my first cycle of BR treatment and told to take it daily for 30 days.
I had them but was taken off them with Ibutrinin only (no rituximab). Still get occasional joint pain, some worse than others but uric acid never been raised
Yes that and another 2 drugs for shingles etc. I used to take 6 or 8 tablets a day but just 3 Ibutrinin now
I'm on ibrutinib and 2x anti viral
I was taken off allpurinol after a few months on imbruvica and Venetoclax. Watch your uric acid.
Well I'm on monthly check ups so I take it the hospital nystagmus be monitoring that thanks
Please don't worry too much, I'm not aware of any reports of tumour lysis with patients on Ibrutinib.
My own lymphocyte count was over 300 when I started treatment and, athough the Rituximab cleared my lymphs quite quickly, I had no problems. I was prescribed allopurinol and they will almost certainly be monitoring your uric acid levels at each visit, as you say.
I find the aches and cramps are due to the Ibrutinib and that will get better over time. It's probably not good to stop the allopurinol yourself but mention it at your next visit and they will tell you if you still need it.
All the best
Here is a case study, and it references other 3/4 grade lysis events in clinical trials with ibrutinib.
Its rare, but why run the risk? Prophylactic is protection...
Our patient’s course suggests that clinicians should be aware of TLS as an infrequent but potentially life-threatening complication of treatment of CLL with ibrutinib.
Dr. Sharman on this... TLS
I was put on allopurinol with the start of Rituxamab. I was told it was to help the kidneys process the protein from the white blood cells that were being killed off. This was to prevent tumor lysis - the kidneys being dangerously overloaded by processing the sudden outfall. Apparently in early trials some patients died, and now the chemo/antibody medicines are started at low doses and slowly increased so there is not a tumultuous amount of dead cells for the kidneys to deal with.
Like you I want to take as few tablets as possible. But it seems like once medicines are prescribed they are often forgotten about. So when I realised that the the risk of tumor lysis was well past its sell-by date I asked if I could come off Allupurinol. And, after 10 seconds of checking kidney, urine and white blood cell values, the doctor agreed. Every once in a while I ask the doctor, is this tablet necessary?
Thanks Peter a very sensible reply. I think that people like myself on ibrutinib are only prescribed it as a precaution as the effects of ibrutinib are less then chemo .
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