Imbruvica Withdrawal

I have been on Imbruvica for 2years. Dealt with the rash initially but it slowly went away. I was on 3 tabs then. They changed my dose to 1 when I changed medications for AFIB. My blood results have been in the low normal for over a year and I felt good except for my curious side effect, a chronic cough with phlegm. I have read 10% of people develop a cough but have not seen that posted. Anybody else with an unexplained cough. The doctor and I decided to try going off the Imbruvica for a while to see if the cough subsides. Curious what side effects people experienced when going off the drug.

36 Replies

oldestnewest
  • I have been on Imbruvica for 8 months. I developed a horrible cough that gets really bad at night and won't go away and prevents me from sleeping. I've been dealing with it for over 6 weeks. On eight occasions or so the cough was so severe that a gag reflex caused me to vomit. I hope it is not a side effect of Imbruvica and is just part of a bad cold and a case of Sinusitus I developed two months ago.

  • I also have sinusitis but i've always had some sort of runny nose. January of 16 I coughed so hard I passed out putting me in the hospital for 5 days. I have only been off the medication for 4 days still coughing. Codeine cough syrup has helped me get some sleep. I'll let the board know of my progress.

  • Due to extensive traveling, I not-so-wisely had Sinusitis for maybe 4 weeks before I finally went to a doctor (in Beijing) and was put on 10 days of antibiotics. The antibiotics cleared up the Sinusitis, but the cough has remained, going on another 3 weeks without much improvement, despite another doctor (in Tokyo) giving me a week of codeine pills six days ago.

  • I, too, have a cough but not really bad. At night i do cough up phlegm also, but only at night. II am in a phase 3 trial at Mayo Clinic. I have been told this is a side effect. The only one I have had. I am in the 5th cycle of a three year trial.

  • I've been on Imbruvica for 4 months and don't have a cough (yet?), but definitely issues with phlegm; so is like when one had like a chest cold and towards the end one still has leftover "crud" in throat ...that's how it has been for about 6 weeks now and it wont finish clearing. Hopefully side effects wont get worse the longer I'm on this med.

  • I was so relieved to read your post Que- sera-sera as I have very sticky phlegm in the mornings which has been hard to cough up some days. I don't have a cough but my voice is croaky until I manage to cough it up. It's now reducing slightly now but I've been on Ibrutinib for 15 months. It appears that there are lots of side effects that only become apparent as they are only reported on sites like this.

  • Yes...mine is also worse in the morning as well and so looks like by what others are reporting, this could be something we might have to live with, in one degree or another, like maybe things might get better during the warmer months. I hope.

  • Thank you for your post on this topic. I have been wondering why I have this nagging hoarseness for the last 6 weeks. No other symptoms and it clears when I cough. I will be asking about this at my next MD Anderson appointment.

    Kim

  • Hi Kim,

    I'm new on the site, just diagnosed on 1/18/17. I also am a patient at MDA and will be starting on Imbruvica. How long have you taken this med and how have you done on it? Thanks,

    Jen

  • Hi Jen,

    I started taking the ibrutinib the first week in October. I was so worried about starting this medication, that I think I worked myself up unnecessarily. The first 2 months were a breeze with just a few side effects, such as a worsening of my reflux. Since then, I have noticed an increase in my fatigue level, some bothersome cramping, and inconsistent bowel movements (one extreme to the other). I thought the fatigue was due to the medication doing its job, but my numbers are down and I'm still quite worn out. I follow up with MDA about every 3-5 months and see my primary care in between. I had labs drawn yesterday and will know more on Friday. I'm curious what your symptoms are, since you stated you were recently diagnosed. Did they tell you why the need to start treatment so quickly?

    Wishing you the best.

    Kim

  • There has been many posts about withdrawal symptoms of Imbruvica. Three years ago it was unheard of but now very common and reported by many patients.

  • Not sure if the cough or phlegm are side effects of ibrutinib but there have been numerous posts on here from cll patients who suffered similar problems with sinus problems and what was sometimes described as throat catarrh.

    I've suffered from this since being diagnosed but the severity peaks and wains over time.

    Possibly needs more investigation.

  • I've been on Imbruvica for 10 months. It has brought my platelet count up from what was often 1 or 2 to now steady counts of 90-110. The doc reduced me from 3 pills to 2 pills due to fatigue. One persistent side effect is sores in my nose like small pimples that hurt. Always have a runny nose as well.

  • Ohio Jim, I developed a small sore in my nostril right near the opening. I thought it just me. Have you consulted your physician about this? I plan to ask ask the my next visit. The only way I get relief is to put a dab of neosporin on a cotton swab and dab it every night. It seems to clear for a bit then return.

    Kim

  • kimiD, I too will ask my doc on my next visit. I have just been living with it, though I do sometimes dab some castor oil on before bed, and that helps. My sores are also near the opening.

  • Hi Kim,

    As part of the rash I developed many started as little pimple like sores. Once they became infected and cephaxlin took care of the infection. I was also given a cream,Triamcinolone Acetonide Cream. Now when a "pimple appears" I dab a little on twice a day and they go away without becoming sores. Works for me.

    Barry

  • I also have sores in my nose but have not started treatment. My dr said it was from the disease, I also have tonsil involvement.

  • don,t think this is Ibrutinib related. I've had what sounds like that same cough, but i'm not on ibrutinib. cough so much when I lay down that I didn't really sleep for a week. went to the emergency room twice. given codeine, mucenix, zpack, tessalon perles, albuterol, and breo. I'm also getting IVIG. After almost a month it's clearing, but still in sinuses. ER doc said a lot of people have it.

    john

  • Began full dose (3) 10/14 - reduced to (2) 7/16 -

    For me - dealing with the symptoms immediately - as they occur - has been the best defense.

    I spray with Biotene

    (moisturizing mouth spray) during the night. This helps reduce the morning cough and symptoms described in this thread.

    We are pioneers in this experiment. We need to share our personal fixes.

    The Doctors - when asked - seem hesitant to agree it may be adverse events. They are always willing to reduce the drug. My sense is we then become another cohort for a publish or perish research paper.

    ***Dose reduction may be harmful and aid the lingering clones into hiding and transformations ***

    Then we become another paper - relapsed/refractory +++

    Insight occurred when I saw a comment from a renowned physician in CLL research - he stated in a casual photo op - "the benefits of BEDDING with the pharmas" -

    Now whose interest do you think has the priority in his reported data?

    Be the Patient From Hell - with finesse.

    -Diana

  • Unfortunately, there are more politics involved in treatment than perhaps we are aware of.

  • One more thought -

    The ACE inhibitors may cause a cough - generally a dry one.

    Many of ibrutinib patients take ACE inhibitors for BP or Afib issues.

    Lisinopril, captopril, ramipril

    are some examples of ACE inhibitors.

    -Diana

  • Excellent point Diana.

  • I have been on acalabrutinib for 4 months and although I had post nasal drip and occasional cough/sneezing before treatment, it has definitely gotten worse. I now cough a lot, especially when first lying down and on waking in the morning. I noticed this morning that I coughed up a small amount of yellow mucus. If this continues, I will call and request an antibiotic.

  • I have been on imbutinib for 17 months now.I started at 3 capsules ,after my numbers came done I was reduced to 2 capsules, and now am at 1 capsule/day.The phlegm has always been a chronic problem as with the cough. My Onc. says it is due to a weakened immune system...and so I have a standing order for amoxicillin/clavulanate 875/125mg and also cephalexin 500 mg.The ceph. does not work as well,but I use to help prevent the infections from developing an immunity to the amox.I have found that drinking plenty of water helps as well as mucinex dm 12 hour max relief capsules help to make the breakup of mucus and therefore easier expulsion of it less discomfort.

  • Was your Ibrutinib dosage reduced because of negative side effects? Or was it simply reduced after your numbers returned to a normal range? (I would love to reduce my dosage once I get to the normal range...unless that in an of itself can cause other problems.)

  • At this time - reduction in the dosage of ibrutinib seems to be the trend ...I am on 320mg (2) for 6 months. Reduced to control adverse events.

    I was advised my labs would be closely monitored. FLOW numbers may rise slightly ( has not happened) but overall well being (I do have less AE) was as important as my numbers. It is a high wire balancing act.

    I've been waiting to read an update from experts like Dr Jeff Sharman (Oregon). He put out a list (2015)? of points on the importance of staying on the full dose of ibrutinib (3) 420 mg.

    He has a blog and his videos are linked in CLL Society and Patient Power updates. His list is available on all 3 sites.

    Side note - When all the magic was happening in the development of ibrutinib - Sharman was at Stanford - a Fellow in the lab. The formula was given up by Craig Ventnor who was preoccupied with sequencing DNA.

    Maybe one of the administrators can provide the link to this fascinating story.

  • Sharman on ibrutinib dosage

    2015

    cll-nhl.com/2015/05/take-yo...

    Jeff Sharman MD /blog

    Medical Director

    US Oncology

    cll-nhl.com/?m=1

    Ibrutinib Development History - (Craig Venter/CELERA - Richard Miller PHARMACYCLICS)

    forbes.com/sites/davidshayw...

  • Thank you for the links!

  • From Sharman - blog -

    Mutated vs unmutated

    cll-nhl.com/2014/04/mutated...

    11q deletion

    cll-nhl.com/2013/11/11q-del...

  • Promise - last reading assignment :)

    These are the 2 links discussing dosage - w some difference in the opinions -

    Take your pills - ibrutinib dosing matters!

    (Jeff Sharman MD, blog , May 2015)

    cll-nhl.com/2015/05/take-yo...

    1 year later 2016 ( Byrd, OSU) - below - I'm still not sure about ibrutinib reduction -

    THE top 15 questions about ibrutinib ( John Byrd MD, OSU)

    CLL Tribune, Ask the Doctor

    cllsociety.org/2016/06/top-...

    Patient - heal thyself ...

    We are all still SFLucky!

    -Diana

  • It was reduced after counts fell regularly in blood tests.It continued to fall into normal range and at 1 pill/day continues to stay there,this has been for 4 to 5 months now.

  • it was not due to adverse reaction or symptoms.

  • Yup, had cough, phlegm, has gotten better with time. Do have chronic stuffy nose, sinusitis. Battle this, especially in winter months with dry indoor air. With copious water intake( bottles by bed, in kitchen, car). Also moisturizer in nostrils with a bit of Eucerin(or whatever is on hand). do use a personal humidifier, by bedside, old fashion eucalyptus inhaler. Anyhing to relieve the wretched stuffy nose, especially at night.

    lots of odd side effects of imbruvica and or cll. one lady i know of has a severe eye irritation(cornea). she refuses to stop imbruvica, because cll has receded with it.

    It seems many of us will put up with side effects, best we can, to sustain a pretty good treatment.

  • What has helped me with an a.m. cough and mucuous, is tongue brushing..after brushing teeth. I use miradent with a small tongue scraper..Then Water Pic my teeth z& mouth. Also breath in some water while face washing..and blowing the nose after to clear the dryness.

  • There is an unusual fungal infection that caused lower Overall Survival in the Idelalisib trials: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii

    en.wikipedia.org/wiki/Pneum...

    Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system.

    Signs and symptoms of PCP include fever, non-productive cough (because sputum is too viscous to become productive), shortness of breath (especially on exertion), weight loss, and night sweats. There is usually not a large amount of sputum with PCP unless the patient has an additional bacterial infection. The fungus can invade other visceral organs (such as the liver, spleen, and kidney), but only in a minority of cases.

    Pneumothorax is a well-known complication of PCP. An acute history of chest pain with breathlessness and diminished breath sounds is typical of pneumothorax

    Len

  • Very interesting thread from us Ibrutinib 'guinea pigs'. I've been on Ib for 18 months and developed a bad chest infection 6 weeks ago that was cleared with antibiotics. Then another productive cough with running nose started that will not stop. It is quite exhausting coughing continuously and now I seem to have passed it on to another CLLer who is not on Ibrutinib so guess I can't blame that. It does seem to be a common side effect though judging by these postings. I suppose the 'L' in CLL does mean Lymphatic i.e. the drainage system so all these excess fluids are coming from somewhere internally but I do wish they'd stop!

You may also like...