Ibrutinib and hypoglycemia

[ElMaga]

has anyone on Ibrutinib experienced hypoglycemia as a side effect? In case I need to go off Ibrutinib, what is now the equivalent drug, with equally low side effects, etc.? I'm not up on what's new.

[AussieNeil Partner Administrator]

You haven't updated your profile to share where you live, but I'm assuming you are from the USA? In which case you have access to acalabrutinib (FDA approved for CLL) and zanubrutinib (off label, as currently approved for MCL). Both have a lower side effect profile than Ibrutinib, as probably do another 11 later generation BTK inhibitor drugs in clinical trials. See: healthunlocked.com/cllsuppo... You may be able to gain access to one of these trials through your oncologist.

No other hypoglycemia related posts have come up, but perhaps you'll later get a reply from someone else with a similarly experience.

Neil

[ElMaga in reply to AussieNeil]

thanks, yes US. I will ask oncologist about these drugs if it does turn out that it is hypoglycemia. One study I read said that it is a side effect, low incidence, mostly in those 60+

[LeoPa]

How bad is the side effect? Can it be that a glucose pill carried in the pocket and taken at the onset of the first signs of hypoglycemia helps with it? That's what diabetics do.

[Newdawn Administrator]

This is very interesting to me because it’s one of the few posts I’ve read where the glucose lowering effect of Ibrutinib have been recognised. Perhaps it only happens in certain individuals but it certainly did with me. As a diet controlled diabetic, it was heaven sent at the time! It didn’t make me hypoglycaemic but from day one I noticed a modulation in my glucose levels. As someone who tests regularly, I know exactly what to expect and this brought my levels down markedly!

Once I stopped Ibrutinib (severe arthralgia side effects), it was like a switch had been flicked and my levels soared! ☹️ I kept a log so documented it.

The medics are not remotely interested in this phenomenon however.

I’m still on mono Venetoclax and this has seemingly no impact on glucose control.

Newdawn

[BluMts]

It's really interesting what you say and Newdawn's reply also interesting. Do wish all Doctors would be interested and aware of these sort of effects from meds and food). Was listening to a talk by Dr Michael Snyder on Continuous Glucose Monitoring, (terribly expensive wearable needed) and gene profiling among other things. He was lamenting that medical practise mostly is so behind what's possible ...... so it's so useful that here we can share info we've got from personal experience. Thank you for sharing that.

[Jm954 Administrator]

You can report this side effect via the Yellow Card reporting system in the UK.yellowcard.mhra.gov.uk

Jackie

[scarletnoir in reply to Jm954]

I do wonder how effective this system is, or whether anyone even monitors it - is it more than pure window dressing?

A while ago, I suffered an extreme allergic reaction to allopurinol, and reported it on that site. I never received an acknowledgment, and allopurinol is still routinely prescribed as far as I know, despite its severe side effects in a minority of patients (most do OK). On the non-scientific askapatient.com site - which depends on self-reporting - allopurinol scores 3.1, which rather masks the fact that it scores many 1s (very bad) as well as 5s (very good) - it appears extreme in both directions, rather than 'fairly good' for most people.

I remain sceptical about the efficacity of that site.

(If anyone is interested, my experience is recorded on 1/21/2013 on the website askapatient.com/viewrating....