Hi everyone!😊 I've been on Ibrutinib since 21st May. I'm getting lots of side effects lately - working at home today with a sore throat. Also getting spots on my face. they're not like normal spots they don't seem to come to a head but definitely not liking the one on the end of my nose ha!😌 Anyone else getting these? I've had aches and pains in my feet and legs plus cramps (these seem to be getting less frequent) and also mentioned in my first post that I had heart flutters. I've now had the results of the echo scan and heart monitor and it appears I have an extra heart beat, which is very common apparently so the flutter is exacerbated by the ibrutinib. Generally I've been lucky enough to be able to do more exercise now so got a bit more energy but still got this feeling of something-holding-me-back sort of sensation, you know what I mean?! My lymphocyte count still hasn't started to come down while on ibrutinib?! That confuses me. I thought I was understanding how it would work but don't know why it's not coming down although the haematologist has said it might just react on me very slowly and so I'm at the 'wait and see' stage. Otherwsie could be put on Iselela bla bla!? can't remember the name of that one properly or, I get more chemo I have seen some on you mention Venetoclax but it hasn't been mentioned to me and not sure how that works specifically. Anyway, getting ahead of myself, have to wait and see how this drug goes for a bit longer and stay positive!
Sorry just feeling a bit low today but glad you're all out there and we can understand mostly, what each other's going through 😊
Here's a lovely picture of Loch Morlich near Aviemore in Scotland for you all where the weather has recently been amazing. Changed a bit now but it was gorgeous😍
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Shira7
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Ibrutinib is not a quick fix, it takes months and years. I am finding most of this stuff is going away after a few months, and my excerise rate has gone though the roof.
I have a great consultant and she wants me to stay on it for a while longer and see how it goes. I realise it isn't a quick fix nothing is. How long have you been on it? Here's hoping my exercise regime goes through the roof too!
Hi Shira, Sorry to hear you are having more side effects. I also have a few rashes which seem to come and go, principally on soles of feet and crook of elbows, varies between small red blisters and tiny red spots, both are moderately itchy but not too bothersome. Sounds like you are in good hands with your CLL team so I wouldn't worry too much at this stage. It seems that some are more sensitive to the off target effects of Ibrutinib than are others. However I am at wk8 and am also seeing a few skin related issues, had to start moisturising my arms as they started to look 20yrs older all of a sudden. Hang in there because if IB doesn't do it for you there are other non chemo options. You mentioned Idelalisib which has been very successful in trials and targets a different kinase than Ibrutinib. I wish you well and here's hoping these issues are temporary and will subside in time.
thanks for that Mike I just had a bit of a dip this morning! Seems like there are different things for different folk. Yes I have those small red blister sort of things and those just pop up now and again but take ages to go. Yes I do have a great consultant - as I said a blip! I'm feeling a lot better this evening.
Yes Idelalisib that's the one. My consultant has mentioned it so I realise there are other options. Wishing you well too
My dermatologist felt the Ibrutinib had awakened my Rosacea. She prescribed Metronidazole 0.75 topical gel. She was correct. It cleaned it up in no time. I have been on Ibrutinib since January 2017 and it has worked wonders for me. The enlarged lymph nodes disappeared right away. All of my blood results are normal and I am back to enjoying life. Wishing the same for you. Sally
I also had a recent Roseacea flare up but there is a similar skin condition that is related to Imbruvica. Had been treating with as needed disease of Docycyline switched to another and developed nasty blisters within 4 hours( common side effect ). Now off the antibiotics and condition cleared...
Stress can also cause Roseacea flare up and I've had plenty ( not CLL related ) lately
Ibrutinib is not a quick fix, as zaax has already said. In fact to start with some people have ALC go up (I think mine went up about 25%).
This was a big surprise in the early daysof Ibrutinib but it happens because Ibrutinib is flushing CLL cells out of nodes causing it to appear in peripheral blood.
If you are unsure talk to you support team. I’m sure they will be able to share positive information.
Nice scene by the way.
Best, rob
I think the general consensus would be to give it time.
Thanks Rob. I am giving it time and talked to my consultant and she's encouraged me to stay with it for a while longer which I'm doing. As i said I just had a bit of a blip today and feeling a lot better this evening.
Apparently it's a very good sign when levels initially go up when you first take Ib I've been told and mine did too - they just haven't come down!
I’m on a clinical trial of Ibrutinib and Venetoclax. Won’t bore you with details here but if you click on my Id then look for posts on My Ibrutinib/Venetoclax Journey you can read about it.
So, in answer to your question - no, not any more. The trial stopped me taking them both in early June, I started in Feb 2017 with expectancy of taking for 26 months. I hit the success targets in early June so still going thru the monitoring but no drugs. Have faith in Ibrutinib (and Venetoclax), based on my experience they are, on the whole pretty good.
While, I have not been treated, and may be speaking above my pay-grade (which is very low anyway) but, if I were on Ibr. and the "wait and see" time suggested a move to something else I would certainly ask about Veneteclax.
That thought comes from what I have read in posts that seem to be with good results in that scenario. I never hurts to ask and get more information.
Glad you are feeling better after a "blip"--hope that continues.
No, it was not expected. I have 17p deletion and the haematologist said Ibrutinib usually clears the blood very quickly with 17p. He had no idea why I'm slow, or why I have had crippling fatigue (which is only lifting now after 30 months). Until recently I could only walk 600 metres a day but now I can do several km. Apparently I'm the only one on my branch of the trial with significant fatigue too...
Hang tough! Hopefully, most of those side effects will disappear or diminish in the next couple of months.
(I just surpassed my second year on Ibrutinib. My blood levels are still creeping slowly toward normal but still aren't there yet. My worst side effect now if perhaps easy-to-chip fingernails and hand/foot cramps, which I'm not even sure if they are caused by Ibrutinib.)
Ronin, I have been on Imbruvica for 10 months & agree with you re: the cramps. Hand, foot & sometimes stomach. Also susceptible to infections including shingles. But worth it all in the big picture.
Unfortunately I had a case of the horrible shingles before I started taking Ibrutinib. Since starting Ibrutinib, I’ve had several bad lingering coughs ( One of which turned out to be pneumonia) which could only be fixed with antibiotics. but I’m still optimistic that things will get better as my blood levels get closer to normal.
We are always here to help each other when we need to complain .... Hope those nasty side effects will subside soon and you’ll feel better .... Once you see concrete improvement in the lymphocyte count it will all be worthwhile!
Here’s hoping it starts to work for you real soon .... Hang in there ....we are all with you !!
Hi, I have started suffering from blind raised red spots on my face, I looked liked Rudolf over Christmas! This started after my CLL started to return 2 years after having FCR treatment. My guess is there is some link between blood and spots. As a child, my mother used to say I needed something to cleanse my blood whenever I developed spots. I have found that washing my face using Clearasil each morning and evening helps followed by Clearasil Lotion applied to the spots themselves. My GP and Dermatologist both agree it is folliculitis which is blocked hair follicles but I am not convinced.
I am starting on Ibrutrinib today with great trepidation over possible side effects but balancing that with the hope it will give me some quality of life back.
I hope the side effects you are experiencing diminish over time and you soon start to feel well again.
As you've no doubt read we all react differently to Imbruvica. Virtually side effect free for me over two years in. There is a skin condition similar to Roseacea that can come up with CLL and maybe or maybe not tied to Imbruvica. It is treated with topical and or antibiotics like Doxycycline
I’ve taken FR, BR and now Ibrutinib. Ibrutinib is by far the easiest treatment for me. Lymph nodes and spleen shrunk immediately. Labs are all normal. I started it January 2017. I’m back to doing the things I love and am very active. Hope it works well for you. Sally
I hope it goes really well for you! Let me put it this way - I know I’ve mentioned my side effects but they’re nothing compared to taking chemo. Good luck and look forward to hearing you’re getting on fine. Not everyone gets side effects remember that 😊
Shira - it sounds like you might have petechiae on your face. I started Ibrutinib May 31. I still get occasional spots on my face or anywhere for that matter.
Shira when I started Ibrutinib in September 2017 my wbc was still high - even higher than when I started - but they told me that that was expected so don't lose hope. I would definitely consult with your doctor about all of your side effects but I think you will be fine.Paula
It is very normal for some people's counts to take a long time to improve with Ibrutinib.
Last autumn when I started on Ibrutinib, my lymphocytes shot up from 508 to 630. It wasn’t till a few months later that they started to slowly come down. Last week (10 months after starting Ibrutinib), they were still up at 137. This seemed very slow to me, but I'm told that is fine, and a slow response to Ibrutinib is NOT a sign that it won't work so well for us longterm.
My haemoglobin (Hb) has been even slower to respond. I was anaemic before I started, but my Hb dropped even lower after starting Ibrutinib. It hovered around in the 80s and 90s for several months, and it wasn’t till April this year (6 months after starting Ibrutinib), that it started to gradually improve. Last week, at last it came up to the low end of normal range (112). What a relief!
I do sympathise re your side effects. They say that about 70% of people do well and have no problems with Ibrutinib, but that leaves 30% of us who do have problems.
I had painful swollen joints, puffy hands and feet, and cramps in my toes. I needed crutches to walk. I couldn't drive, I had sore, cracked fingertips, mouth ulcers, sore throat, nausea and stomach problems. I had no appetite and lost a lot of weight. I had many spots and rashes. The spots started as strange brownish blotches on my face. Later I had raised red spots on my arms and neck, which were very itchy.
Most of the initial side effects disappeared after a couple of months, then the next wave of side effects started, which also lasted a few months.
BUT, right now, I feel reasonably well. The only problems I have are nausea and stomach pains a few hours after meals. And a sun sensitivity, which means I’ve been staying indoors through all this lovely weather.
I also have a lack of energy, but this started MUCH earlier in my CLL journey so I can’t blame it on Ibrutinib.
I know what you mean by the “something-holding-me-back” sensation…. I slump drastically after 4 pm and have to have a sleep for a while if I’m going to have a functional evening.
I can understand how you feel a bit low these days, with all that’s happening to you. Most of us have times like that. I certainly do…
On a brighter note, I love your photo of Loch Morlich! I’ve never been to Aviemore, but we love Scotland and usually go there for our summer holidays. Our son and his family live in Glasgow so we combine it with a visit with them.
I just looked at your post from a week ago. Great to hear that you're managing to keep so active in spite of everything. It always helps to keep moving, if we can.
I've been retired for 10 years now, but try to discipline myself to go out for a walk twice a day, even if it's just the 20 minute walk round the block from our house. This evening we drove out to the edge of the Peak district, and enjoyed a walk on the wild wet windy moors. Very envigorating, and good to feel rain on our faces again.
Wishing you all the best as you continue on your CLL journey
Hi Paula thanks for your reply. I'm sorry to hear you've had quite a few side effects since your start on Ib. I did start it before my symptoms became too bad as I was very low (blood wise) when I had my last treatment, which was chemo so wanted to start Ib before I was wiped out again! It has helped greatly I'd say. It meant my Hb wasn't so low although it dipped when I started and I had to have a transfusion. Fortunately it's stayed steady since then which is why I've managed to do more exercise. I'm beginning to realise, with the help of all you lovely people out there, that there is a lot more to this drug so I feel it will help me so prepared to stay on it. We'll all get there in the end! 😊 I think a cure is coming for this disease in the near future there's so much research being done on it.
I'm glad you like the photo you should visit Aviemore sometime it's an amazing place and is a holiday resort all year round. It is busy but not mobbed! Beautiful for walks and cycling and so many more activities and the scenery everywhere is stunning.
I'm so glad your Hb has gone up and hopefully the side effects will abate with you soon.
Thanks Hazel. Great that your side effects haven't been too bad.
I might have done better if I'd started taking Ibrutinib earlier, before my Hb had dropped so low. It dropped even lower when I started on the Ibru - same as with you (though I didn't need a transfusion like you did). It then took a long time to recover, and is still only just within normal range.
But as you say, we'll get there in the end...
I hope I'll get to see Aviemore eventually. Still got a lot of beautiful Scotland to explore...
You know Paula if you're still struggling in a low range Hb I would talk to the consultant/doc about a blood transfusion. It does so much more than just help with your energy levels. I read your first post again, I would have thought that when you were struggling so much with a low Hb earlier that the doctor would have suggested a transfusion. I know it's sacred stuff but when you need it... It's worth having a chat with your consultant about it?
Thanks Hazel. Yes, I too had wondered if a blood transfusion would help (when my Hb was in the 80s and I felt so terrible). Maybe I should have asked... But I believe they have certain guidelines for transfusions and my Hb wasn't low enough. Do you know how low yours was, when you were given a transfusion?
When my spleen ruptured there was no question about it - I was given blood transfusions very promptly!
When my Hb was slow to pick up after Ibrutinib, my doctor did suggest I have Aranesp infections to stimulate the production of red blood cells. But he warned it could cause many side effects, so I decided against it.
I hope you're doing well and able to continue with your exercise regime.
Best wishes,
Paula
P.S. I just looked at your profile and saw your banner picture. Are they the mountains around Aviemore?
Hi Shira7, My partner has been on it for the past year now and (fingers crossed) everything seems to be going OK. He's recently had a scan and been told that his lymph nodes have gone down. The consultant was worried about his white blood cells lowering but they seem to have levelled out. His hands and feet now get cold most of the time. He is also taking co-trimoxazole daily to ward off any chest infections. He still gets a cold (even with getting the flu jab) but it's not as bad and doesn't last as long as it used too. He can't eat oranges at all anymore. I think generally you become more susceptible to more things. Recently he has had a few dizzy spells, but that is most probably due to his blood levels being a bit low after being sick with a cold. He usually eats healthy, the hardest part is getting him to drink enough water!
I would keep a diary or notebook on how you are feeling, when you've had colds. Just be conscious of how your body is reacting, how you are feeling mentally, are you taking any extra vitamin? Take Vitamin D. The Consultant recommend my partner take this as well. As you say, it could just be a case of wait and see. Stay positive! I think there will be blips along the way, until thing levels themselves out. Plus you have the most beautiful scenery and fresh air around you which will help enormously, lucky you!
I have only been on Ibrutinib 2 months. Most of the many side effects didn't last long. I do have the rash back and red spots on my nose. My rash doesn't bother me. I have told my doctor of all the side effects.
Good they haven’t lasted for any length of time so far long may that continue for you. We’re all different and react differently I hope your IB journey is a positive one 😊
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I have seen some on you mention Venetoclax but it hasn't been mentioned to me and not sure how that works specifically. Anyway, getting ahead of myself, have to wait and see how this drug goes for a bit longer and stay positive!
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