Ibrutnib, HBP, RLS, and insomnia issues

[sportage21]

I'm an 80 year old male and have been on ibrutinib for the past 18 months. The ocologist approved my request to reduce my treatment to 2 doses per day but has so far refused my request for an additional reduction to one a day. I've lived a healthy lifestyle so ibrutinib is the only medication I've been on. But now, my bp has crept up to treatment levels (>150), I have issues with restless legs syndrome, and insomnia is an issue as well. I also have braydycardia (low pulse rate) which I've had most of my life and which I thought was a positive.

My questions: Can anyone recommend a medication for ibrutinib induced hbp? Is anyone on medication for restless legs and if so, does it work? How about general insomnia, any benign medication for that? I find cannabis quite effective for insomnia at the right dose, but tolerance issues are a problem if used too much. Also, correct dosage is an issue for edibles. Too much can cause sleep issues. Any thoughts or experiences with the above issues?

[cllady01 Former Volunteer]

Hi Sportage, the safest and most reliable way to handle high blood pressure is to first see your Primary Care/General Practitioner.

I hope you soon get your blood pressure under control safely. Also, it would be wise to call your CLL specialist and report your blood pressure issues.

Please let us know how any prescription BP medicine is helping you. It is sometimes a trying of several different meds. before the right one for you is decided.

[sportage21 in reply to cllady01]

Thanks for your reply. Last week I went to my MD and asked for a prescription for clonidine which is supposed to lower blood pressure and act as a sleep med. Unfortunately, it did neither. It decreased my already low heart rate down to 41 which led to shortness of breath and at the same time, my blood pressure actually went up. My sleep was a real negative adventure. I quit taking it after 4 days and had serious rebound HBP which was quite scary. I was concerned about a stroke. My oncologist warned me about ibrutinib and hbp. I see her next month so will discuss it with her.

[Jm954 Administrator in reply to sportage21]

I think you might be in the USA and, if so, I might be asking my oncologist for a change to Zanubrutinib which has a much lower incidence of hypertension and other side effects.

Otherwise, Amlopidine is thought to be safe with a BTKi, it's important to be careful as some categories of anti hypertensives have been associated with increased risk of ventricular arrhythmia and sudden death.

[sportage21 in reply to Jm954]

Thank you, but I live in Canada. I'll check out your suggestions.

[Jm954 Administrator in reply to sportage21]

Unfortunately Zanubrutinib is not yet approved in Canada. I only know because we are collaborating.

[sportage21]

Thank you for your reply. There are medications for treating rls but I need to do more research on their effectiveness. I suspect my rls is part of my general insomnia. If I sleep soundly (rarely) it's not such an issue. Cannabis is usually effective, but I don't like using it every night because after a while tolerance becomes an issue so it's necessary to increase the dosage. Next month I will visit my oncologist so I'll discuss it with her. I was hoping someone had success dealing with issues similar to mine.

[AussieNeil Partner Administrator in reply to sportage21]

You need to be careful with cannabis, CLL and ibrutinib. There's evidence that cannabinoids can reverse the effect of ibrutinib, so that CLL moves back into the nodes, where it is protected. healthunlocked.com/cllsuppo...

That's going counter to your wish to move to a lower dose of ibrutinib, while keeping your CLL under control.

Neil

[sportage21 in reply to AussieNeil]

Your post certainly makes one think about cannabis use, but the health impacts from sleep deprivation are absolutely known. As we all know, insomnia has very serious consequences to health. If I were younger, my attitude might be different. I think the jury is still out on whether cannabis is a curse or a godsend or something in between. If the US would legalize it federally, we would have a lot more good research about its benefits and its negatives. Many drugs have serious side effects: I believe cannabis is relatively benign for most people.

[AussieNeil Partner Administrator in reply to sportage21]

Hi Sportage,

I strongly agree how essential adequate sleep is to our health; it's very important in maintaining our struggling immune systems, let alone foundational to a good quality of life.

With respect to your specific circumstances, per pubmed.ncbi.nlm.nih.gov/213... "Among the three major cannabinoids, CBD most potently inhibited CYP3A4 and CYP3A5"

For the same reason that grapefruit is to be avoided when taking ibrutinib as explained in general terms here: fda.gov/consumers/consumer-... , it's quite possible that your cannabis use may be behind the increase in blood pressure you are experiencing with ibrutinib. Accordingly, you may find this paper interesting to share with your oncologist.

Effect of concurrent CYP3A4 interacting medications on ibrutinib outcomes in patients with CLL

ascopubs.org/doi/10.1200/JC...

Basically, your uncertain dose of cannabinoids may be making it difficult to juggle the management of your CLL without increasing your blood pressure. It's a pity you can't switch to zanubrutinib or acalabrutinib, but the same issue potentially exists, but to a lesser degree. It's challenging when there are multiple health conditions that involve interacting medications.

Neil

[mrsjohnpaul]

What time do you take the Ibrutinib? I take 140 per day between lunch and dinner. When I took it at bedtime it caused insomnia. I have been on it for over 6 years.

[sportage21 in reply to mrsjohnpaul]

I take it at breakfast, thank you.