Blood platelets and ibrutinib

[Elnaazz]

Hi, is there anyone in this group who has low blood platelets while taking the drug ibrutinib ? According to the doctor, if the platelets are low, the drug should be changed. Does anyone have any experience in this regard?

[AussieNeil Administrator]

The doctor is right! There are many more BTK Inhibitors becoming available with less off target effects, so switching to another approved BTKi, such as Acalabrutinib, can prevent this issue: ncbi.nlm.nih.gov/pmc/articl...

See also healthunlocked.com/cllsuppo...

Neil

[Elnaazz in reply to AussieNeil]

Thanks for sharing the information , I will definitely read it, but unfortunately Acalabrutinib is very expensive for us.

[OaktownA in reply to Elnaazz]

Have you contacted Astra Zeneca? They have a program (think it’s called Acccess 360) that helps pay for quite a bit of the Acalabrutinib. Call them directly!!

[Elnaazz in reply to OaktownA]

Thank you so much 🙏🏻 I will try it

[Tapps]

Just started Ibrutinib in July 2021. Platelets were perking up. 147, this week they are 114. When I started Ibrutinib they were about 87. Now I am concerned.

[AussieNeil Administrator in reply to Tapps]

Provided your platelets remain above 30, you shouldn't be too concerned, as platelet transfusions aren't given until they are at least lower than this threshold. (Depends on country and whether you also have an infection, but if you are otherwise well, transfusions may not be given until platelets fall below 10).

Below is a guide to the likely indicators associated with different degrees of low platelet counts (thrombocytopenia). Ibrutinib tends to interfere with the clotting process somewhat, so symptoms generally associated with a lower count can appear at a higher count when you are on Ibrutinib.

USA Range Range most elsewhere

100,000 - 149,000 100 – 150 Little to no risk of bleeding

50,000 - 99,000 50 – 99 Increased risk of bleeding with injury

20,000 - 49,000 20 – 49 Risk of bleeding increased without injury. Spontaneous bruising will be seen (mostly on the arms and legs)

10,000 - 19,000 10 – 19 Risk of bleeding greatly increased

Less than 10,000 <10 Spontaneous bleeding likely

Neil

[Tapps in reply to Tapps]

Thank you, first thing that comes to mind, is, ( the Ibrutinib has stopped working )

During my 10 months of Ibrutinib, all has been going in the correct direction. Guess this is only one lab test, we’ll see what next month brings.

Be well, be safe ✅

[WinJ3]

My plats are consistently around low around 110 or so. The doctor told me not to be too concerned.

[Berrytog]

Yes, mine are lowish, about 110, but slowly going down from 175 two years ago but all else is normal and has been for the last twelve years I have been on Ibrutinib except for A Fib in the last three. My consultant suggests it is because of the two whiskies and half a bottle of red I take on a daily basis to help me deal with my wife's Parkinson's now bedridden with a complete personality change more akin to Adolf Hitler rather than the quiet, slightly shy person she used to be two years ago!!I am due my three monthly check up at the end of this month so I will see if there is further change in my platelets. Second jab tonight, no adverse symptoms with the first, in fact, I did not know they had done it until I was told I could go!!

[Elnaazz in reply to Berrytog]

Thank you 🙏🏻 best wishes for you and your wife, be safe

[stevesmith1964]

My consultant expects my platlets to remain below normal. They were 43 when I was diagnosed in November and I went straight to treatment, Obinutuzumab and Ibrutinib, platlets are now stable at 116, I expect them to remain there. I am moving to acalaubrutinib in 3 weeks due to back pain side effect, so could be interesting to see what my platlets do then.

[Elnaazz in reply to stevesmith1964]

my father also has platelets 43 and he has started ibrotinib. Thank you for your answer 🙏🏻

[morepork]

Yes my platelets took a dive from Normal once I started Ibrutinib , into moderate thrombocytopenia. Current count 73 but ranges up and down around that figure. No access to Acalabrutinib here or I would have chosen to change. But lucky to be on free Ibrutinib so not complaining.

[newyork8]

I believe this is a known side effect of the drug. ..not a reaon to stop if above 100 or so. Mine from 110 to 120 often and on Ibrutinib for years.

[Cali69]

I started in July 2020 also. I just had my first normal bloodwork since original diagnosis in 2015, with exception of my platelets. They were at 38 when I started imbrutinib, they went up to 140 then dropped to 114. They have been there for 3 months. Doctor is not too concerned since it’s stable and all other counts look really good.

[janvog]

When I started with IMBRUVICA 420 two years ago my platelets were 140. Now they are 256. Could diet and exercise be a side issue in your case case ? I have perfect diet and exercise, although doubtful that this is a decisive factor.

[Elnaazz in reply to janvog]

Thanks for your reply, yes it can work