I’ve been on Ibruntnib since 14 months ago. My doctor asked me to lower the dose from 3 tablets(420mg) to (280mg) without any explanation for the reason except to lower the side affects of high Bp, and the second doctor didn’t like the idea of lowering the dose. I really feel confused.
Any experience you can share or advice would be very helpful.
Your labs look great.
I have been on low dosage Ibrutinib for little over a year now. My CLL specialist recommended low doses because of my level on CLL. His idea was that it could be increased if necessary.
So far the low doses is working good for me.
Hi ANA4 ,I've been dropping the dosage over the last 18 months and I'm now on 120mg dosage per day,so the lowest dosage,I have maintained good blood results for the last 6 months on it,getting very little side effects too!
I was down as low as 1 capsule 3 times a week. It still worked but I still had side effects and while the number of lymphocytes technically went down, my % of lymphocytes kept climbing so it was a wash. There isn't much literature with controlled studies using lower doses & some docs do not like stepping outside the boundaries of approved doses. My local onc(not a CLL specialist) was uncomfortable with lower doses initially, but the CLL specialist(who does a lot of clinical trials) in the system reassured her that he had a number of patients on lower doses so she felt better about it. My experience has been, younger or less experienced with a particular patient subgroup docs are unwilling to change recommended regimens. Since there is some concern about ibrutinib resistance, I can see where doc #2 may have reservations. But if your blood pressure is getting unacceptably high, something needs to be done & slightly decreasing the dose is easier, quicker, & less involved than trying to switch to a totally new treatment just before holiday season in a pandemic.
Hi Ana, I have been on 140mg per day for the last 12 months or more in an attempt to reduce severe side effects. Tried going with 280mg but that made very little difference but the move to 140mg helped a fair bit, although I still get some side effects albeit somewhat tolerable. I would look at it as a maintenance dose once the heavy lifting has been done by the full dose.
I have been taking 140mg ibrutinib per day for last three years and doing fine. I take 10mg norvasc every day. Blood pressure good. I am 74 years old.
Hi Ana, I'm a month short of 4 yrs on Ibrutinib. Because of side effects, after about ten months on it my very experienced CLL specialist reduced me to 280 my daily. I felt a lot better on the reduced dose though still have side effects. My blood test results are good and don't jump around. The specialist plans never to reduce IB before patientvhas been on the standard dose for 10 months. He would never start a patient on a low dose and build up to higher dose as some were doing 4 years ago.
It must be confusing for you if your two doctors give different advice... do you relate better to one than the other? And more importantly is one more experienced in the prescribing of IB. Has either been in control of IB trials. In your position, I would go with the more experienced Doctor. Though if the other was very intelligent, thoughtful and caring it would be difficult. Good luck.
I chose to go on low dose over 2 years ago, to get rid of cramps and seizures....it worked, and no change in lab results, still good. The symptoms lessened noticeably. Right now am off for 3 weeks, as I had parathyroid surgery. will find out tomorrow what blood tests are like after 3 weeks. Hopefully will be no change and will go on again. After all in trials they use higher doses (that can be tolerated) to make sure they get the the best possible results they are seeking. I weigh 145 and am 75 years old.
Hi onu1tadi2, I did not know that seizures are a side effect of IB. Seizures similar to those caused by epilepsy or similar to what?
I was on the 3 caps 420 - reduced to 2 280 a few months back as having “gut” issues. My results been good and feeling better. I had been on the 420 for about 10 months with good results. Good luck with your decision - Helen Australia 🇦🇺
I was switched from 3 to 1 , 4 years ago when I started on an Afib drug. The irutinib has continued to keep my numbers good.
My experience with IB was fraught with many side effects - mostly bleeding issues, and that was at the 280 per day. As time went on it was not working so I was switched to Acalibrutinib. Same sort of med, but WAy less side effects. And it continues to work as I am able to take full dose.
I started out on 3 capsules but after 8 months reduced to 2 capsule due to side effects. Things seem to be going great with the lower dose as my cll specialist is always pleased with my monthly blood results. I should add though that i have ivig every 4 weeks since May due to ongoing infections. Should add that i am stage 4 and 68 yo...but overall feeling pretty good.
My wife went from 3 pills to 2 pills to 1 pill over a 6 year period, due to the side effects of various pains. Her labs were stable over that period. She has since switched to acalabrutinib about a year ago. Stable labs, but still MRD+. CLL still under control.
I'm 78, and after reading the clinical studies, I decided to start out on 280mg on ibrutinib/Ibruvica. I've been on ibrutinib and on that level for about 8 months, with minimal side effects (a bit of cramping, mimimal upper respiratory issues, a nose bleed here or there), but I'm happy that I'm able to live my life without major side effects. * Over the past couple of months my white blood cell count has remained steady at about 40,000, suggesting that I've hit a point of resistance. I've spoken to my oncologist, and he indicated that as long as my WBC level is stable I should have no problem remaining on 280mg daily. In other words, according to my oncologist, I shouldn't have any additional issues with my liver, spleen, lymph nodes, etc., than I may currently have. Therefore, instead of moving to a higher level of iburutinib, which may cause greater side effects, while still butting up against a wall of resistance, and instead of trying a different targeted therapy drug, I'm staying where I am—at least into the foreseeable future. Hope this helps, and wish you all the best.
I started Taking the 420 mg 1 year ago and my dosage was changed to 280 mg for the same reasons. I responded very good to the treatment, so my doctors thought it be best to lower the dosage, one factor is that I only have one kidney, doing well on the lower dosage.
It depends on your weight I think. I think its 2.5 mg per kilo. I'm 100 kilos so 250 mg (round up to 280mg) should do for me. You need enough medicine to block the BTK. It makes sense your size would play a role does it not? I'm taking 420mg anyway as my side effects are minimal. Don't quote me on the formula as I am not a doctor I just play one on TV.
I was told by my CLL specialist when I first went on IB that it didn't matter if you were male or female and your weight was not a factor in prescribing. The same dose for all. I have been on the drug for 3+ years (@420 mg capsule) now with very good lab results and minimal side effects. I am waiting on the results of a flow cytometry test. My doctor has hinted that he may take me off the IB if results of the test are good (MRD). I'm wondering if maybe I should just go on a lower dose rather than going off completely. Will ask the MD about that.
About two years ago I was on 3 tabs daily (420mg) I had an episode of tachycardia (fast heart rate)/ A-Fib (Atrial Fibrillation) a rare side effect of Ibrutinib. My heart rate shot up to 300 bpm. My oncologist took me down to 1 tab (140mg). My doctor said the data was that patients had the same response on the lower dose. I have seen no changes in labs or anything with the lowered dose. I am being treated at the University of Pennsylvania and I have absolute confidence in my doc and care team. On the A-fib front, hopefully no one has one of these episodes. But helpful info. I was not in Philadelphia at the time and went to a rural hospital. First! Have the doctor call your care team!!! I was put on IV cardizem, which helped some in bringing down my heart rate but it really resolved on its own after 18 hours, and mental focus on bringing down the rate. DO NOT let them give you Cardiac Ablation (giving an electric shock to those cells in your heart). It is not an electrical issue in your heart! Yes it is scary, but I had no cardiac issues prior and I received no damage to my heart from the episode. And no A-fib since they lowered my Ibrutinib.
I am concluding a combination type trial and had some issues with Ibrutinib.
I had several on again/off again sessions and am currently taking on 280mg daily.
Months ago I brought the question of dose reduction up with Dr. Wierda at MDA, he told me they do not have an active study but are trying to reduce the dose wherever possible.
From my experience the drug usage has been somewhat flexible, so I would go ahead and take the dosage reduction but keep an eye on future blood results, my opinion only.
regards,
John
Hi Ana4, newyork8 makes an important point re people’s weight. I too have heard that 2.5 mg Ibrutinib for every 1 kg body weight is a reasonable daily dose.
When I started Ibrutinib in October 2017, I was given the full dose of 420 mg daily (as most people were). Yet I only weighed 54 kg, so on that basis might have been OK with only 140 mg (ie one capsule as opposed to three).
I had a lot of side effects – swollen painful joints, nausea, stomach upsets, blurred vision, mouth ulcers, cramps, dizziness, rashes, nose bleeds, bruises ,dry skin, cracked nails. I could hardly walk and was extremely tired and breathless – not surprising as my my haemoglobin had dropped to 86.
I stuck it out, hoping things would improve in time. After 6 weeks, the joints calmed down and swellings went away. Such a relief – I could walk properly again. Other side effects went on longer though, and my Hgb was slow to improve.
Six months after starting Ibrutinib (April 2018), I still had stomach issues and nasty skin rashes, so my doctor said I could reduce from 3 capsules Ibrutinib (420mg) to 2 capsules (280mg). After that, things gradually improved, but it wasn’t instant – it did take time.
Nine months later (Jan 2019), I was still getting some rashes and stomach problems, and I reduced to 140 mg Ibrutinib daily.
I’ve been on 140 mg ever since. It's now over 3 years since I started Ibrutinib and I still get stomach problems, but it's much better than it was. No more rashes – except when I was prescribed Co-Trimoxazole as a prophylactic and the joint pains and rashes I’d got in the early days of Ibrutinib returned. I stopped the Co-Trim and those side effects soon disappeared.
So, that’s my Ibrutinib story. I’m slowly gaining weight (I’m now 57 kg) and wondered if I might need to increase my dose of Ib. But my bloods are stable and all within range except for ALC which has been very slow to creep down and now hovers around 25 (thousand). Before starting Ibrutinib my ALC was over 500 (thousand) so it’s come down a long way.
I’d like to see my ALC come into normal range but my haematologist isn’t bothered about it, as long as other things are OK. I was interested to read Pogee 's story, who has a stable WBC of around 40,000 on a lower dose of Ibrutinib.
People do have very different experiences, but I think more thought needs to be given to the widely varying weights of different people.
Paula
Thanks Paula. It's helpful to hear your experience. Yes I’m very much convinced with the weight and the right dose. Please let me know what you mean by stomach problems as I have some issues with my stomach since I started to take Ibruntnib but don’t know how to describe the pain. I feel sometimes pain inside the stomach , bloating, little pain on the sides, stomach grumbles and sometimes the pain only in one area of of the abdomen!?
Hi Ana,
You ask what my stomach problems were. Well, it's a bit complicated.
I was nauseated, I had diarrhea, I also had constipation. I was bloated and had “indigestion” that was sometimes pain straight after meals, and sometimes a different sort of pain/discomfort that came about 2 hours after I’d eaten. Often the pain was relieved when I bent over, but not always. Sometimes antacids like Gaviscon helped, but not always.
I think it was more complicated in my case, because I’d had my gall bladder removed a few months before starting Ibrutinib. At first the lack of gall bladder was no problem, it was great to be able to eat fatty foods again with no painful repercussions. But later I wasn’t so sure, as fatty foods seemed to be a problem again.
So, it was hard to know what was causing the different symptoms. Eventually my GP referred me to a gastrologist. When I told him that I was on Ibrutinib – he smiled and said that several patients on Ibrutinib had been referred to him for stomach problems. Most of them turned out to be due to that drug.
However, he wanted to be on the safe side so ordered a gastroscopy. I had that done and they found nothing “sinister” just biliary gastritis – ie bile in the stomach, that can cause inflammation. That was probably due to having had my gall bladder out earlier. However, my symptoms only started when I’d started on Ibrutinib – not straight away after the gall bladder removal. So it seems that starting the Ibrutinib was an extra irritation to the stomach, that was already being affected by bile.
All rather complicated.. A lot of this doesn’t really sense to me, which is why it’s taken me a while to reply to you.
After I’d reduced my dose of Ibrutinib, things did gradually improve. Strange to say, stopping the Ranitidine (that I’d been taking regularly for acid reflux) also helped.
Interesting that you too find your stomach problems hard to describe. Abdominal pains can be caused by a great variety of things. I think everyone’s guts are probably a bit different, but it seems that adding Ibrutinib to the mix does add stresses and complications to our digestive systems.
Doctors have different opinions about dosages of Ibrutinib so it would be good to discuss it with your doctor again, especially if you are less than average weight and after 14 months are still getting side effects on 420 mg.
Hoping you find some positive ways forward,
Paula
Good luck to you, Paula. I hadn’t heard about the weight to dosage issue with regard to ibrutinib until just now, but for years I had been arguing that weight and time of day were important factors. Dummy me that I didn’t consider it with the most important medication in my life! I’ll be asking my oncologist about it ASAP. By the way, with your side effects, have you been tested for certain specific factors before being given ibrutinib? The coFounder and MD of the CLL Society has an article on the importance of being tested first, and speaks to the markers one should be tested for.
Hi Pogee,
You ask what tests I had done before starting Ibrutinib. Well, I had been part of a trial (with Idelalisib) a few years earlier, so had a LOT of tests done then. Some of those tests aren’t normally done (in the UK), and some are only done just before treatment.
The most relevant results were that I had no deletions of my 17p/TP53 genes, and am IGHV mutated. Detail are in italics below, if you're interested.
“FISH analysis shows that 75% of lymphocytes have a bi-allelic 13q14 (DLEU7) deletion detected. No evidence of a RB1, TP53 or ATM gene deletion.
IgH VH mutational status: mutated showing 93.9% homology to the germline VH$-34 sequence (18/293 divergent bases.
The peripheral blood and bone marrow show extensive involvement with CLL”
Anyway, being “IgHV mutated” and having a 13q deletion (with no TP53 or ATM problems), are all considered to be good prognostic markers when you have CLL. So it could be that people who have those favourable markers and are also lighter in weight, will do better with a lower dose of Ibrutinib than heavier people with not such good markers. (ie those who are “IgHV unmutated” and have deletions of TP53/17p)
However, it might turn out that it made no difference that I had those “good” markers. So little is known about these things… So much research still to be done.
I hope that in future, more will be understood about the best doses of Ibrutinib for different people – taking weight and genetic markers into consideration, as well as other pre-existing conditions. It would be great if the worst side effects could be avoided by giving lower doses to the relevant people.
Paula
To add to what I wrote earlier, the key thing is that we need a big enough dose of Ibrutinib to inhibit all the CLL cells in our bodies. (Thanks AussieNeil for mentioning that to Miller1960 )
Finding exact doses for different people is complicated so doctors tend to stay on the safe side, and give the full 420 mg - which original research showed was both safe and effective. If people cope well with that, then probably no need to reduce the dose.
However, I don’t think enough thought and research has been given to smaller people with favourable “markers” who get very difficult side effects and would do better on a lower dose.
In my case, it may have been co-incidence but it was only after I reduced from 420 mg to 280 mg Ibrutinib, that my haemoglobin started to recover from the drop it took in the early months on the drug. Also, after the expected rise in lymphocytes at the start, my lymphocytes have been slowly been decreasing ever since, even though I only now take 140mg Ibrutinib. The counts have had a few wobbles on the way, but at the last count they had decreased again. My ALC is now 21.8 (thousand) – lower than it’s been for MANY years.
So, that makes me think that for me, the reduced dose is OK. This is just my experience of course and I’m sure everyone will have a different story. As I said, I am not a large person and have favourable prognostic markers.
ANA4 , if after 14 months on Ibrutinib your bloods continue to be in normal ranges, I can understand one of your doctors suggesting lowering the dose, due to your side effects. I can also understand the other doctor being unsure about the idea. There are sometimes no definite rights or wrongs to these things… CLL is very variable and complicated, and there’s still a lot to be discovered re best use of the new drugs.
Paula
Hi Paula, I just spoke with the second doctor and he is not convinced with the a lower doses, his concern is that taking a low dose may not inhibit all the CLL cells in my body and the disease might come back to step one.I already started the new dose (280) since the begins of this month.
NOW, I can tell I am more confused and don’t know what to do!!!!!!!
You have a great doctor. I went from 420mg to 0 IBR after 18 months of treatment. I have been off all treatment for 2 years (body vacation). Some of my numbers are starting to go back up, but it was fun while it lasted.
CHEERS BARGER1951
🍻 🥂
HiI'm on a lower dose 140mg, lasted 10 days on full dose.At the time I was 115 pounds at 5ft 1" so some believe this was to high of a dose for me. Im doing great and blood work almost I'm normal range. I believe the biggest fear for the dr's is that your body becomes immune to low dose and it stops working. I'm 19months now .With all the new therapies available I'm not to concerned about it.
Technically, the concern is that taking a low dose may not inhibit all the CLL cells in your body. Lack of inhibition means that the CLL cells can continue to divide, so
1) The CLL tumour continues to grow and more importantly
2) The CLL cell divisions provide an opportunity for Ibrutinib resistant sub-clones to arise, so the Ibrutinib stops working and you have a harder to treat clone.
Neil
Yes thanks for the thorough explanation, my dr. was concerned about that happening but after my experience on full dose i was pretty reluctant to try again.My dr slowly got me up to one 140mg a day.Unfortunately Dr Yee top specialist at Royal Jubalie hospital in Victoria has left the hospital to pursue his own practice. At the moment I'm having phone appointments with a new Dr.that I haven't warmed up to.Apparently he has taken over for a Dr on maternity leave as well as my dr. So he's busy and really impersonal. For now I have to stay put.
Miller1960
Good luck with the new doctor. Good ones are hard to find!
Hi Ana4. I have been on ibrutinib since august 2016. In 2018 I had neutropenia and was hospitalized. They gave me an electrocardiogram because my heart was going crazy. Had Afib Was taken off ibrutinib for 6 months went on Eliquis 2.5 mg then put back on ibrutinib at 280mg a day. Since then have felt great no afib problems blood work all good. Even my platelets go up and stay in semi normal range goes between 95,000 to 115,000. Dr says I’m good and no problems. I’m 76 yr old female. Blood pressure has gone up only because I’m under a lot of stress of losing my husband of 58 yrs in July. Cardiologist bumped up 1 pill and started Norvasc. BP finally good. This covid has been a worry for everyone and do helpThe stress. I wish you luck and will keep all of u in my prayers. ❤️
Hello Corkyrissa, I am deeply sorry for the loss of your husband, sending you lots of love and continue to stay safe💙
Ty your very sweet. 🙏🏻❤️
I'm so sorry to hear about the loss of you husband sending you a virtual hug and some flowers.
I had been reduced to 280, and then to 140. My numbers are holding.
I've been in a clinical trial since July 2017 through MD Anderson in Houston. I started out at 420 mg but by September I had developed atrial fibrillation. The trial also included venetoclax. At some point that fall, the team (including the cardiologist at MDA) decided to reduce my ibrutinib to 280 mg. The atrial fib continued and eventually we got down to 140 mg. By September of 2018 I was disease free (MRD negative) but still experiencing atrial fib.
At that point we all got randomized into ibrutinib vs placebo groups, as the point of the trial was to find out about maintenance protocols. I kept experiencing atrial fib, so we were pretty certain I was not in the placebo group. As of about mid-2019 I have gone to 140 mg every OTHER day, which I continue on until now.
Somewhere along the line, my atrial fib converted to atrial flutter and the cardiologist recommended cardiac ablation. I put that off for 6 months or so because, quite honestly, the idea of that procedure scared me considerably. However, two months ago I agreed to have that ablation done and it has eliminated my heart problems completely! I should have done it sooner. Anyway, I'm still on 140 mg every other day and still MRD negative. Sorry for the long-winded answer, but I thought it might be helpful to know the persistence of the side effect of ibrutinib even though it seems to continue to be effective at the much lower dose.
Have been on IB 3.5 yrs. and had a list of side effects: rash, bruising, cardiac svts, vts, heart racing, sinus, incidental stroke, arthralgia, joint pain, stiffness, indigestion. Reduced dosage to 70mg daily a year ago. Still experiencing arthralgia & stiffness but other issues have resolved. Took a 6 week holiday from IB Sept./Oct. 2020 for 6 weeks to identify side effects from IB. Started to node after 6 weeks. Resumed IB 70 and after all that, I am happy to be maintaining my CLL and enjoying my life as I hope all of you can and will also!
HelloI am not familiar with low-dose Ibtrutinib. Is this what you meant? (you spelled it Ibruntnib)
What I DO KNOW, is that I was on Ibtrutinib for three months and it gave me heart palpitations, so I switched to Acalabrutinib.
Seems to be fine after 4 months.
Have you tried Acalabrutinib??
Hi!!! My bf has been on low dose imbruvica for 2yrs. He’s supposed to take 280 every day but he’s lowered it himself to one pill every other day. Sometimes every two days. We are the ones who asked the dr to lower it.
As far as lab values....onc says he’s as NED as someone with CLL can be.
Two works great for me.
low dose antibiotics/life after Ibrutinib?
Has anyone had to deal with mouth sores? If so, what was your process? 
Is anyone with cll on daily total 140mg ibrutinib & what are your concerns?
Has anyone started V-0 treatment recently with positive results?
Does anyone have Cold agglutinin disease that has CLL/SLL
