I posted recently that I had been diagnosed with gout in big toe and so came off Acalabrutinib for a week whilst I took the medication.
Before the gout healed, I started with foot pain, quickly followed by hip pain (RHS). After ice packs started to help, then the pain moved to left shoulder and now it is in my RHS hip and this morning back in my foot. It feels to me that I have a little alien in my body that is going around my joints with a hammer and doing as much damage as it possibly can. To be honest the pain is bad and I'm having to get my head around that after 4 years Acalabrutinib is no longer my friend.
I have bloods on Monday followed by hospital call on Wednesday. In the NHS will it be easy to make the switch to another BTKi e.g. Zanubrutinib or do you think they are going to make me suffer and just say - just take paracetamol! My quality of life is in the basement now and basic functioning has become a challenge.
Has anyone got any advice or experiences to share please.
Thanks in advance
Kate
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Eucalyptus22
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I can very much identify with this Kate having experienced this extreme roving joint pain whilst on Ibrutinib. Whilst the drug worked its magic on the CLL, it became a daily/weekly ‘where will the pain strike today’. As I went into treatment with significant osteoarthritis, it was difficult to know to what extent it was that or the aggravating effects of the Ibrutinib. However the pain spread was odd. I’d have days I could barely walk or put pressure on a knee. The next day it was completely gone and I could tap dance on that leg! 😳 One night I thought I’d dislocated my shoulder and it was the worst pain I’d ever felt. By the next day it had disappeared and I could make no sense of it. Over that time I developed deteriorating spinal stenosis and I now have at least three ‘collapsed’ discs that they are unwilling to surgically touch due to my immune compromisation. My GP was the one who detected that my CK levels (creatine kinase) were massively elevated indicating muscle damage was occurring so the Ibrutinib was stopped and I remained on mono Venetoclax until I reached uMRD. (CK is an enzyme found in the heart, brain and importantly for my case, skeletal muscle). This is rarely checked and my haematologist certainly didn’t test for it.
Like you, this was exacerbated by the inability to take any anti inflammatories and I’m afraid paracetamol was the only answer (supplemented at night by codeine).
I’m now on my second treatment Zanubrutinib and I can honestly say the joint impact doesn’t seem so severe (but it’s early days so 🤞). I’m still in significant pain with my back but I suspect that’s a permanent feature. It’s the unpredictable and quite sudden, severe pain from BTK’s that is hard to endure like you describe as a little hammer going round your body.
Hope you can find some relief and maybe discuss the possibility of Zanubrutinib with your doctor. I can’t be sure it will make a difference but I’ve certainly found it preferable. There’s always side effects however with every med and mine is petechia at the moment. Have woken up with it over my eye lid (and a burst vessel in my eye from coughing) which wasn’t the look I was going for to attend a wedding on Saturday! 🙄
Thanks Newdawn. Reading your description it completeley mirrors mine and I am wondering if I am looking down the tunnel of a deteriorating skelatal situation. A friend has spinal stenosis so I fully understand what you are going through and hope it isn't on the cards for me.
I had a look on the CLL Society (US) web page under FAQ and it certainly talks about shifting to Zanubrutinib due to Acalabrutinib bone pain.
I will be talking to my team on Wednesday but wondering if I'll get push back. In this era of NICE and costs and value for money is Zanubrutinib more expensive than Acalabrutinib resulting in not changing my drug - who knows but its certainly crosses your mind these days.
Thank you very much for sharing your experience with me.
Kate just to throw something else in the mix. I was on Ibrutinib and last year developed a painful left foot and ankle that moved to right hip and right foot and back again. After several trips to Orthopaedics and various tests the original diagnosis was Complex regional pain syndrome. After research I disagreed and the diagnosis was changed to bone marrow odema. On researching that better described my symptoms and it’s something that appears and suddenly disappears for no reason, so if you haven’t ask to see Orthopaedics it is worth an appointment.
Thanks Colette. Just had a quick google about bone marrow odema. Certainly a possibility which I will add to my list to discuss. Am I right in that you are off Ibrutinib currently and if so, did the bone pain improve?
The wandering pain went several months before stopping Ibrutinib because of AFib. 🤞
I am also lucky that one of my best friends is an Osteopath and she would come and massage me on a regular basis. Discovered Weleda do a massage oil with Arnica that helped.
I also tried, didn’t work for me, Amitriptyline. Supposed to do something with messages to the brain ? But it helped my stepdaughter before she had spine surgery. I am a great believer in research and trying things, and from what I have seen from some of your posts you are the same.
I'm right now having a lot of lower back pain shortly after starting Zanu, but I'm not sure it's connected and don't know how I would figure it out unless I switch meds.
I had the same problem with back pain a couple of weeks after starting Brukinsa. It developed during a 5 hour car trip. I could hardly stand up. After about 5 days I went to an ER. My Neutrophils were at zero. However to shorten a longer story, I did get much better over a month or so. After a year I am very good with minimal side effects!! There is hope! And, all of my blood numbers are within the normal ranges!
I have been on Acal for nearly 4 months. My blood results are greatly improving but the side effects have been pretty awful. Fluid retention, pains in chest, swollen legs, reduced mobility, extensive bruising, mouth blisters and pulsatile tinnitus. Basically, I’ve been reduced from being a semi-normal functioning human to a fairly immobile invalid. However, in the past few weeks the intensity of these side effects has lessened and my haematologist is confident that, as my blood data approach normality, they will reduce much further. The fact that the medication is dealing effectively with the CLL is the dominant factor for me. So my message is to keep the faith and battle on.
Sorry to hear you are experiencing such side effects. Having become semi mobile myself this last month, I can empathise. Keeping mobile is also an important part of dealing with CLL so it's tough when the treatment causes so much distress and immobility.Before I started treatment I had pulsatile tinnitus which stopped instantly when I had a blood transfusion. How is your red blood cell count.
I hope as your body adjusts to the drug, it adapts and returns you to a better state.
Thanks, Kate. My red blood cell count dropped to near-transfusion level then recovered. Another positive sign. This is a tough battle but one worth suffering a bit in order to win! Fingers crossed for you, me and everyone on this site. It’s probably different for each of us but we’re so lucky that new drugs can help so much.
Interesting to read all these comments. I’ve had hip pain (only RHS) for a few months and put it down as part of the aging process. It’s pretty constant and I would describe it as feeling a bit like a trapped nerve. I think I will definitely mention the possible link with Acalabrutinib at my next consultant appointment in November. Hope you get sorted 👍
Muddywater, what you describe could be sciatic pain which may not be related to the Acalabrutinib. Physio can help with that as I know from experience.
Sorry to hear of your pain..I was put on allopurinol when I was diagnosed with CLL in 2012 by the oncology team at Wake Forest..and still on it today. I also would take colchrys if I had a gout flare. About to start Gayza and Veneteclax for my third attempt to beat this deal..The gout is extremely painful..I hope that you can get some help..soon
I've read a lot about cherry juice and uric acid and started eating them a couple days ago. Probably too early to tell but pain not as bag in some areas today. Foot though seems to be holding the line . It's determined 💪
Gout is caused when the kidneys are not adequately removing uric acid from the blood. Although apoptosis from dying cll cells is known to increase uric acid, I have not yet seen a publication stating gout as a side affect from Acalabrutinib rather arthralgia are quite noted. Allopurinol is one drug that is used to manage uric acid levels in the blood and it is prescribed with O+V to prevent tumor lysis during treatment.
I am curious to know if you have a prescribed diagnosis stating that you have gout resulting from the use of Acalabrutinib, and what the reason might be for not adding allopurinol to the treatment regimen.
I believe that adding allopurinol to CLL treatment protocols to manage uric acid is quite common and it seems reasonable that an oncologist would consider the possibility before halting or changing a treatment that is otherwise producing results.
I have severe gout and I know that it is very painful. I hope that you get both the gout and CLL resolved soon.
This all started with severe pain in big toe. Front of foot also became red and swollen. The swelling then spread across the front of my foot and my GP diagnosed gout and I was prescribed colchicine tablets. The GP and the hospital both felt it probably had something to do with Acalabrutinib. They worked fine and foot was almost better when pains started randomly in other joints. Just moving around and no set pattern to it. Kidney function (creatine?) was 76 at last bloods but I wasn't told if I had any problem.
My hope is that uric acid has not been implicated in any joint as I've no intention on taking allopurinol after my experience of it when I started Acalabrutinib. Didn't suit me at all.
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