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Hello,

I am new on this site. I started on Imbruvica a week ago and was told that the side effects are minimal and was curious if this is true. I am already acheing in my hands,wrists, and calves. Also is there a better time to take the meds? Morning, afternoon, or night. I was diagnosed in 2012 and went through chemo that same year but in the last few months things have gotten worse so now I'm doing the meds. Would love any feed back and or advice. I am also having to take IGG treatments once a month for the next six months.

Thank you, Debbie

12 Replies

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  • Hi Debbie,

    I am not the best suited to answer the question regarding side effects, but can address the timing of imbruvica dosing. It needs to be taken on an empty stomach and per MD Anderson 2 hours befor eating as food increases the absorption and may raise levels too high. You need to avoid grapefruit, seville oranges AKA "sour oranges" which are used to make orange marmalade, pomolos and tangelos. These particular fruits interfere with the metabolism of the drug and may also raise the levels very high.

  • The advise about the citrus is correct, but the dietary restrictions are less an issue, as it has such a wide safety margin the increased absorption with food is not a clinical concern for most of us. Might make sense for Debbie as taking it on an empty stomach is one way to "reduce" the dose. Brian

  • Muscle and join pains are common, can be severe and sometimes persistent, but they usually get milder over several weeks. Ibrutinib can be taken any time of day, so experiment to see what works best for you. Stay strong Brian CLLSociety.org

  • My husband has been taking this drug since Sept 2014. On and off three times due to surgery, however, he has felt most unwell for approx 2 hours after taking it every single day.We asked the haematologist if he could change the dose time to 'night' rather than morning, we wonder if feeling unwell was linked to the fact that he takes a total of 9 other tablets for various problems.... quite a cocktail. Changing the time has made a huge difference to his general wellbeing, he is alert and eager to start each day.

    His blood levels last week show mostly now in the normal range except WBC 11.7 and platelets 125. We are incredibly grateful that he was offered the opportunity to be included in the trial.

    He does have repeated skin problems, currently a wart infection on his face and neck, and odd bruising mainly on his lower leg and feet, but hey ...... not a lot to moan about is it?? best wishes look forward to hearing good news from you shortly about your progress on Ibrutinib!!

  • Hello

    I am taking Ibrutinib (with monthly infusion of Rituximab) as frontline treatment. I am 3 months in. I find taking the pills first thing in the morning is best and then I snooze again for half an hour before tea, food etc.

    The aches and pains for me have occasionally been severe. I now know that I can usually source the cause so it is worth being aware of your activities and how you might reduce stress eg. just beating eggs made my arm ache! I realise we can't control all our movements but a lot of stress can be avoided ed by awareness. Also I find that the pains seem always to be in a different place. But since we have about 700 muscle groups I have a way go. Best of luck, and keep us informed about your progress This sight has been a lifesaver for me.

  • My Dr. (Furman- one of the lead trial doctors that has numerous patients on Ibrutinib for over 4 years) recommends taking the 3 capsules at bed-time, with a few sips of water - for those of us bothered by nighttime bathroom trips.

    I've been through many of the common side effects like bruising, minor bleeding from numerous skin cuts, joint aches, muscle aches or spasms, gastro problems, etc. most last a few weeks and are more of a nuisance than serious.

    I do have problems with a skin rash that has persisted and only subsided while I was off the drug for one month. While the rash went away, my ALC rose from 9k to 40k in that one month, so if I must stop the drug, I expect a fast, strong, progression.

    Dr. Furman and I will discuss the next step on March 17th or sooner.

    I hope your discomforts are short and bearable.

    Len

  • Good luck with your next appt Len.

    Jeff

  • You'll be able to find a full list of side effects on line or in the written protocol you should have been given with the drug.

    Mine have been minimal and have largely passed with time.

    I take Ibrutinib first thing, with three other pills, with water. My protocol states that I should not eat for half an hour before eating, or for one hour afterwards.

    Good luck with it.

  • My side effects were substantial and I had to withdraw from ibrutinib treatment in the third month...

    We are all different, but report everything to your doctors immediately...

    ~chris

  • Hi Debbie,

    I have been on Ibrutinib for 55 months now and have learned through talks with many patients that side effect response to Ibru varies from patient to patient. The body appears to go through a period of adjusting to the drug that may include several side effects like rash, diarrhea, A-Fib, joint and muscle pain. Everybody seems to get brittle fingernails. The side effect of pain, if not tolerable, can be alleviated by short course of steroid according to my oncologist Dr. Byrd. Some patients have been taken off Ibru due to the pain. Given the transient nature for most side effects, patience might get you through this unfortunate development. I would suggest paying attention to hydration with regular intake of water and slow movement exercise with emphasis on stretching.

    Although I escaped the pain side effect, I had to work through angioedema (facial tissue swelling), loose stool, severe dry eye irritation and heart arrhythmias that led to a pacemaker. I might not be here if it were not for Ibrutinib and the great care received from doctor Byrd who worked with me as I encountered these problems. The best timing for taking the drug seems to be variable as well. Many find taking it in the evening to be best and others, such as myself, take it upon waking.

    Biotin for brittle fingernails appears to help most people though you may need to experiment with dosage. I take 5000mcg (that is micrograms not milligrams). Biotin comes in strengths that range widely and up to 10,000mcg. It takes time to make it work.

    Good luck and hope Ibru works for you It took over three years but my CLL is only detectable by Flow Cytometry and though my platelets are low I am very active with a good quality of life at 72 years.

    WWW

  • You are an inspiration to me. I just turned 53 and was diagnosed at 49. I have been told I'm on the younger end of the Cll diagnosis but if you are 72 and doing well it lets me know I WILL get through all these weird little side effects.

    Thank you WWW

  • Thank you all for all the advice and info.

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