What time do you take your IB: Hey y’all just a... - CLL Support

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What time do you take your IB

steve_canada profile image
32 Replies

Hey y’all just a question as to when is the optimum time to take Ibrutinib.

I take mine at 3:30 pm everyday

Thanks

Steve

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32 Replies
annmcgowan profile image
annmcgowan

Hi Steve I take mine at 11pm every night.

Ann

every am betwwen 7-9 am

mrsjsmith profile image
mrsjsmith in reply to

And me ! By the bedside table and take before I get up. Thought that was the safest and to make sure I don’t forget.

Colette

Jm954 profile image
Jm954Administrator in reply to

Me too!

Like Colette, a glass of water and the Ibby are on the bedside table so that I take them before I even get out of bed in the morning.

Mind you, once I think I took them twice because, despite using a tablet dispenser thing, I got the wrong day and then saw later that the current day was still there and took them all again. Didn't realise till a few days later when the day I needed was empty and it shouldn't have been. Ah well, no harm done!

Jackie, going back to the greenhouse now :)

WinJ3 profile image
WinJ3

Between 9am - 11am

Win

AKAICUsurvivor profile image
AKAICUsurvivor

Just after breakfast - scarily, the lockdown has put me off my routine of med taking because when I went out to work, breakfast was 6.30am now it’s 8.30, maybe 9.00 maybe 10😳 - find I forget to take everything!!

Newdawn profile image
NewdawnAdministrator in reply to AKAICUsurvivor

Me too Sepsur. Hubby has put a timer alert on my iPad for the evening Venetoclax but I take Ibrutinib after breakfast (whenever that may be in this structureless world!).

Newdawn

AKAICUsurvivor profile image
AKAICUsurvivor in reply to Newdawn

Am I right in remembering that you have to be a bit careful with overrunning the clock too much ie over 3hrs past when you normally take it? Did I imagine research nurses saying that I should then leave it to following morning?

Newdawn profile image
NewdawnAdministrator in reply to AKAICUsurvivor

I usually remember within a 3 hr period so it’s never been an issue but I have taken it slightly later. I’ve never really been given detailed instructions to be honest.

Newdawn

Jm954 profile image
Jm954Administrator in reply to Newdawn

The only instructions I was given was not to take it within 30-60 minutes of eating. The only time frame I could guarantee I wouldn’t have eaten was first thing in the morning!

Newdawn profile image
NewdawnAdministrator in reply to Jm954

Strange, I always take mine after breakfast Jackie and looking at the advisory literature, it said it didn’t matter.

Venetoclax however seems to be better taken after food.

Newdawn

steve_canada profile image
steve_canada in reply to Newdawn

Hi Newdawn, so are you taking both IB and Venetoclax?

Newdawn profile image
NewdawnAdministrator in reply to steve_canada

I am Steve as part of the Flair clinical trial. I prefer not to take them together as I have other meds to take too.

Newdawn

steve_canada profile image
steve_canada in reply to Newdawn

That’s great....I have heard very good things about taking this combo. I asked my oncologist about this and he said unfortunately in Canada we have to wait until Phase3 of these trials have completed.

Glad to hear it’s working well for you.

Canuck901 profile image
Canuck901

That’s an odd time , most people take it

In the morning after breakfast or after supper 7-9pm

I don’t think it matters though , is that what your CLL specialist team told you to do ?

steve_canada profile image
steve_canada in reply to Canuck901

No he just said to take them every 24 hours.

Canuck901 profile image
Canuck901 in reply to steve_canada

Yeah that sounds right 24 hours apart I don’t think it matters what time of day but most people take in the morning or evening

country76 profile image
country76

I take mine between 9-10 pm.

I set the alarm on my phone for 7pm and I have never had any problems.

antonb profile image
antonb

7 pM

1susiE profile image
1susiE

mid morning to allow full nutritional benefit of breakfast to have left the stomach and the whole day to build up the microbiome and flush the system with pure water before the next onslaught

P444ete profile image
P444ete

8:15am every day

morepork profile image
morepork

Well down here in NZ, I take my Ibrutinib in the later evenings, and judging by all the replies it's very much an individual choice with no one right answer.

(Very true for a lot of CLL related issues I guess) 😊

LynnB1947 profile image
LynnB1947

My weekly pill box sits next to my coffeemaker as a reminder to take my pills - usually between 7 am & 10 am. I used to take my ibrutinib around 8 pm but I was having some insomnia, and I wondered if the IBR might be the cause. I seem to sleep better at night if I take the IBR in the morning. However, I admit I still have insomnia from time to time. LynnB

Mprm profile image
Mprm

7 a.m. for me, after a couple of cups of coffee. As a consistently early riser, this is a time I can be sure I’ll remember as the rest of the day is less predictable—in normal times, of course.

Agatesup profile image
Agatesup

I have been on Imbruvica since September 2017 and always take the medication at 9:30 p.m.

MN1999 profile image
MN1999

I set a phone alarm and take the Ibu at 9:30 am. I tried various times in the day / evening but found an empty stomach, plus drinking LOTS of water with the med has helped me avoid nausea. I would prefer to take it in the evening but don't want to get up 2 or 3 more times in the night to use the bathroom!

I also usually do time-restricted eating which seems to help. I only eat during a 6 to 8 hour time frame starting early afternoon.

Elizabetha profile image
Elizabetha

I initially took mine at 10pm however due to having to take it with 250ml of water which resulted in several trips to the loo during the night I switched to taking it in the morning, as soon as I wake up.

I have noticed though that I am now prone to some nausea late morning, I have been wondering if it's maybe because I take my Venetoclax after breakfast and it's a bit too soon after taking the Ibrutinib. Another thing I have noticed is that the thought of coffee at this time makes me feel really sick! Probably just a coincidence 😝

Storygirl profile image
Storygirl

I take mine at bedtime (12 am) every day. I have never had any problems with side effects except tiredness. I read that taking it at bedtime can help with side effects, but I'm not sure what the most effective time to get the most benefits from the drug is. I am so grateful for this drug that has given me remission from one of the most deadly forms of cll. Best wishes to everyone.

DelrayDave profile image
DelrayDave

At bedtime, which varies over a couple of hours. It may mean nothing, but my afib has been gone now for four 4+ months. I think, or perhaps just imagine, it was worse when I took it in the afternoon or after dinner.

Lulu8581 profile image
Lulu8581

I take mine first thing in the morning with a huge glass of water. I was told hydration is important with ibrutinib....

Cllsller profile image
Cllsller

Hi. I take mine every night before bed.

Dorothy

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