CLL Support Association
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Best TIme to take imbruvica?

I start imbruvica to-day and was wondering what is the best time to take the 3 pills. With food or without food? In the morning or in the evening? I have ongoing gastro-diarrhea problems caused by past cancer treatment for colonrectal and I am worried that imbruvica will cause me even more gastro problems. I also have neuropathy from past treatment so I am also very concerned about the muscle/bone pain that some are experiencing . Added into the mix I have chronic kidney disease so I am very aware that I have to drink lots of water and keep hydrated. Any advice that will make this journey with imbruvica more tolerable would be much appreciated. Thank you

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That should have been discussed Joyce.

With water only, in morning

Unsure, please call your oncologist on duty, or visit the Imbruvica website

~chris

All the best semi colons rule🌀🌀🌀

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Hi Chris, instructions say once per day with our without food. I have heard that some people take it at night to try and "sleep through" the side effects. I think that I'll do the happy medium and take them at 5pm (supper time)every day then I will split the difference. Nurse called me and she again stressed the DRINK LOTS OF WATER! I will be on allupurinol for 14 days to start.

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It appears to me that one size doesn't fit all. After 2 months of nightly imbruvication-I find right after breakfast works best for me. I've heard the opposite from other cllrs. A cll specialist might be able to help.

Best of luck-bill

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I am drinking so much water that I am pretty well tied to the bathroom. I hope that I am flushing my "old" kidneys enough. I will ask my hemo/oncologist if she knows of the best time to take imbruvica.

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Hi Joyce. I take mine first thing in morning, with glass of water, and then don't eat anything for 2 hours (which is normal for me in morning anyway). I decided to do it this way because everything I read says you will have less side effects - especially GI side effects - if you take it on empty stomach, and keep stomach empty for 2 hours after. The only time that works for me is first thing in morning because once I start eating, I eat and snack and nibble throughout rest of day and evening until bedtime. I've been really happy with this dosing schedule, and have had no GI side effects.

Rick Furman, MD had this suggestion regarding the side effects of Ibrutinib and timing (sorry I don't have link to original source of this quote):

"The side effects that are consistently seen with ibrutinib include GI (mostly diarrhea, but also cramping, bloating, reflux, and gas) and bruising. The GI side effects are markedly reduced if one takes the ibrutinib at bedtime. I believe this is due to not having food in the GI tract while EGFR is inhibited by the ibrutinib. The ibrutinib only needs to be taken with sips of water (so you are not all night urinating)."

Apparently, it's the EGFR (epidermal growth factor receptor) that Ibrutinib inhibits in the intestine that's considered responsible for the gastrointestinal (GI) issues.

Good luck!

kim

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Kim...thanks for the post. I am "overthinking" and anticipating the worst case scene. This is only day 1 I will give this a bit more time. Glad to hear that you are doing well.

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I asked this same question right before I started - about what time of day was best for lessening side effects, and with or without meal. We've all been there! And the instructions are very nonspecific on these points.

kim

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Hi Joyce,

I take Ibrutinib at the same time each evening on an empty stomach and I have been lucky not to have had any side effects. I learned during chemotherapy that if I could sleep through the worst of the side effects I would do well. I set the alarm on my phone so I don’t forget and I keep them in a daily pill box so I know that I have taken them. Ibrutinib worked immediately for me. I feel fantastic. Best of luck.

Sally

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I take it in the morning when I wake up at 6:30 AM. I use an iPhone app timer as a reminder. I eat breakfast and drink coffee at the same time or shortly afterwards.

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I have been on IB since Aug, also taking them around 6:30am with a glass of water, followed by breakfast half hour later. The main reason is because my dinner timing is irratic, quite a challenge to have 2 hour without food before bedtime. But I have been experiencing GERD recently, maybe I should try taking at night....😴

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I take my 3 IB tablets between 8:30 AM and 9:30 AM. I have a sensitive stomach so I always took it with breakfast. However, I've learned it does not upset my stomach so I'll eat a snack and then take the IB and be just fine. The initial side-effects of fatigue and muscle ache faded with time. After 6 months of taking IB the major side-effect is finger and toe nail chipping. Very annoying. I'm treating my nails with Vitamin E. I also have some skin discolorations on my arms that look like bruises. One of them is growing which makes me nervous.

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I take the 3 pills at night before going to bed, 2 hours at least after dinner.

Works wonderful.

I have similars gastro problems and neuropathy.

Ibrutinib's pick is 5 hours after intake, so I sleep it over.

As for the bone pain - they were awful, but lasted 4 weeks and are gone now.

Try it at night.

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Hi, I was told two hours after eating and half an hour before, so I take mine early evening before I start cooking. That' s plenty of time after eating and it takes me at least half an hour to prepare food. To start with you will need to take on board a lot of water to flush out the dead cells. Your white count will go up considerably before it starts to drop. At that time of day the excess water will help with cramps and joint pain but I am afraid they are par for the course in the beginning and could last two or three years gradually lessening. You will also get brittle finger nails that split so keep them short and wear gloves for work. And finally, avoid Oranges and Grapefruit and all citric fruits, that includes products such as Seville Orange Marmalade. These items, particularly near pill time can make you very very ill. Otherwise 'Bon Voyage'. Most of us experience no symptoms or side effects other than the above. In fact, within a week or two you will be on top of your game.

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I started Imbruvica 11/1/17 after 5 years of W & W. So far no side effects except some mouth sores which come and go. I also soak my fingernails in olive oil for 10 minutes twice a day to avoid nail problems. My nails look great!

I take my 3 pills at night. I do not eat anything after 7:00 pm and take my

pills at 9:00 pm. I set my FitBit alarm so I don't forget. I go to bed around 10:30. So far so good.

Best of luck to you on the pills.

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When you say you soak your nails in olive oil - so just stick them in a bowl of olive oil for 10 minutes? I am still having annoying issues with my nails - tried everything except this so wanted to clarify. Thanks!

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Yes, I stick my nails in a bowl for 10 minutes one hand at a time. While I'm soaking the other hand I use a finger or thumb on the hand I just soaked and rub the olive oil into the nails and cuticles. I usually do it while I am watching tv or having my morning coffee. So far so good!

Give it a try and let me know. I started doing it a week before I started my pills because I read that nail problems are a common side effect of the pill.

Good Luck! 😊

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I forgot to tell you that I warm the oil up in microwave first. I do not wear nail polish either so the oil can soak in the nails.

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I’m 15 months into ibrutinib so will be interesting to see if this works - thanks!!

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I found this study a while back. It will help determine the time to take Ibrutinib.

The effect of food on the pharmacokinetics of oral ibrutinib in healthy participants and patients with chronic lymphocytic leukemia

ncbi.nlm.nih.gov/pmc/articl...

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Hi I've been on Ibrutinib for 15 months I take my 3pills at 9.30 religiously on a empty stomach then don't eat till1 hour after taking them . Just my personal preference, Good luck hope u do well on them .Then drink 5pints of water daily

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Since I was afraid when I first started to take this that I would have some gastro problems, I decided to take it after lunch, which for me is around 1 pm. It's worked for me to take it then after eating two meals, and fortunately we're almost always home at that time. We do most of our shopping in the morning. I didn't experience any diarrhea, but it did make constipation worse, so I take SennakotS . Muscle and bone pain are still there, some days worse than others, but we can't take any aspirin products or any Advil, no anti-inflammatories, so I take Tylenol, but it really doesn't work. Tylenol never took away ANY type of pain for me. I was prescribed Tramadol by my primary care physician and I take it occasionally, 1 a day.........helps some, but an Excedrin would do as much if I could take it.

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As so common answers all across the board. I've been on Imbruvica for 18 months. I take it in the morning sometime after breakfast but " no clock watching".... usually about 9 am butbif I get busy it could stretch to 11 am. No major gastro problems and my blood numbers are those of a person without CLL

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Hi Joyce,

Because you are at the beginning of an Ibrutinib (Imbruvica) journey it is important to stress that patients can experience a variety of side effects in varying degrees of severity ranging from no side effects to those that require dose reduction or even switching to an alternative drug.

The vast majority of patients experience only mild side effects and even most of these are transient. Diarrhea is common in the beginning but often resolves after the first 9 to 12 months.

I was part of an early Phase I Trial in which we were instructed to take our capsules on an empty stomach with plenty of water and no food for an hour after taking the drug. This is not the protocol now that Ibrutinib has been approved so you can take it with food or not. Compliance is most important to ensure efficacy and I prefer the morning when I am on autopilot to take my Ibru the first thing after waking up so I don't forget. The way the drug works you have an up to margin of leeway to meet compliance for the goal of inhibiting the target of the drug (BTK) to the desired maximum of 100%.

I never had more than a loose stool problem which resolved after a few months. If problematic diarrhea occurs Dr. Furman, a CLL specialist with extensive experience using Ibrutinib, recommends taking Ibru at night with "sips" of water so I would ignore anyone mandating you take lots of water. Drinking lots of water is good but loosing sleep from peeing all night is counter productive to your health.

Because Ibrutinib is not a specific inhibitor of the signaling kinase BTK it also inhibits several other kinases that have potential for causing a variety of side effects. Your body will likely go through a few months of adjusting to the drug. I have met two patients who claim they have never experienced any side effects. I hope you will do well and the odds are in your favor.

WWW - Failed FR & HDRTX started Ibrutinib in June of 2011 doing great.

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Joyce I started Ibrutinib on September 27 of this year and I take my 3 pills around 7:30 p.m. in the evening. I eat an early meal - usually around 3 or 4 p.m. and then don't eat anything else that day. I also go to bed early but of course that might be for everyone. I do make sure that I drink at least 2 liters of water a day. I haven't had any side effects so far so I hope you'll be as fortunate. Best of luck on your journey.

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Joyce ... 44 months on IBR here, and doing fine, except for brittle nails (keep them short) and wavy hair (I use hair gel now). I have the joint & muscle problems when I overdo, and of course, muscle cramps in places I've never had them before (torso).

I took IBR at bedtime for the first 3 years but switched to mornings earlier this year because I was having insomnia. I don't know if IBR was the cause or not.

Looks like you can go for the option that is most convenient for you & then adjust as necessary. Wishing you much success with IBR!

Lynn

SLL, 70, 44 months IBR and wishing for a '57 Chevy of Christmas ... LOL

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LynnB, It’s nice to hear I’m not the only one with wavy hair! Mine is OUT OF CONTROL, so much so that I have to wear it pulled back & up! I’m currently using leave in conditioners. What type of gel are you using?

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I don't know which gel is best but my daughter bought some that helps. It's "got2b Ultra Glued Styling Gel" by Swartzkopf ... in a black tube. I put it on after washing my hair while my hair is still wet. Then I comb it immediately while still wet. After it dries, I comb it out.

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Thanks! I’m anxious to try it! I’d like to get my hair cut short, but afraid I’ll look like I stuck my finger in a light socket! 😬

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Thank you, everyone has been very supportive. Going to give ibrutinib my best shot.

Wishing everyone a very merry and happy holiday season and all the best for 2018.

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My doctor recommends I take it at night before better a couple hours after dinner to avoid food interaction. Also the fatigue happens at night. If you take it with food you it is strong but it is not required.

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I have been taking my Ibrutinib in the morning for the last 15 months with food and I have now switched to early evening. My oncologist at Mayo said it is fine to switch time of day. I wanted to give my morning thyroid medication a good chance to absorb as my thyroid has been low so have switched the timing of my ibrutinib and upped the dosage of the thyroid medication. No ill effects so far.

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I'm on synthroid and take it in the morning! Been on thyroid meds for over 30 years. My thyroid meds have steadily been increased over the years...happy to say that my thyroid levels have now stabilized in the normal range. I do hope that Ibrutinib doesn't affect thyroid levels.

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It’s not supposed to but who really knows - everyone has their own body chemistry

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Sunny: I am sorry I should have said that I have not had to have a dose increase in my synthroid and that my numbers are steady now.

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When taking it the specialty pharmacist said to take at night.

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