I’m 54, 3 years with CLL, 2 years on Acalabrutinib, suffering badly from fatigue and aching limbs. Recently developed pain in my right shoulder, and some loss of mobility. Had similar pains in my left shoulder but to a much lesser extent. Haematology, sent me for a MRI to see if it was a trapped nerve in my neck. In the meantime I’ve developed pain in my right knee, with some loss of range of motion.
Inflammatory marker blood tests are all ok
Any suggestions on what investigations and in what order should be carried out with a view to determining the cause.
Thanks
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Tomaljoe69
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Are you taking any other medication apart from Acalabrutinib that could be causing pain?
I had intense pain in my right shoulder for a while when I was taking Zanubrutinib and statins. I stopped the statin and it disappeared.
My haematologist said "That's a very specific pain to attribute to statins" but agreed for me to stop taking it (partly because my cholesterol levels weren't terrible). My hunch proved correct.
I bounced around with Zanubrutinib & Acalabrutinib. Full dose Zanubrutinib caused chest pain that wasn’t treated promptly and led to Pneumonia & Aetelasis in 13 days. So then I went 1/2 dose on Acalabrutinib for 10.5wks & the bone pain plus the 2 week headache was serious. I couldn’t even imagine full dose. But with the untreated pneumonia I experienced chest pain & back to the ER for the 3rd time in 3 months.
At this point I restarted Zanubrutinib at 1/4 the dose & stayed there for 3 months. I however now feel the abdominal lymph nodes growing even though the blood work is really good; So today after reaching 6 months on BTKI Therapy I will move up to 1/2 dose. 80mg in the AM & 80mg in the PM.
I am feeling serious bone pain as well but Zanubrutinib seems to go after your weak areas in my opinion. I have cardiac arrested 3X before 10yrs old due to bad Asthma. I also have multiple job related injuries. Especially this malunioned fractured left hip of 12 years, feels like its about fall off. An xray confirmed worsen arthritis. I will see Orthopedic & Physical Therapy will be ordered. What I love about these BTKI Therapy is that all the studies are at your fingertips. The benefits outway the side effects. My Homegym was created for me to Rehab with my Bilateral Total Knee Replacements, Malunioned Fractured Left Hip, Bilateral Rotator Cuff Tears with only Right Arthroscopy, Cervical Lumbar Radiculopathy & Sciatica. So I live with pain. Best advice I got was for Aqua Aerobics. Get in a pool & workout, heat, ice, stems, elevation & anti inflammatory pain meds. I hope you get good care .
They state bone/joint pains as a common side effects so we must find the remedy!
I’ve been on Acalabrutinib for 10 months. My side effects in the beginning were difficult. Through this site I learned how to manage some of the side effects. I continue to wake up every morning with a headache and muscle and joint pain. After a cup of caffeine my headache goes away. Once I start moving about my muscle and joint pain seem to subside. A few months ago I had bad pain on my right side. After a few tests nothing was found. I felt like a little kid. No one believes me. I’m not making this up. Now I have some rashes on my body. I often think my body is like a Stephen King horror movie. What else is going to happen to me. Again, thank goodness for this site. I realize that I’m not alone with odd symptoms. I did have painful sciatica for 3 years. Thought it was due to an injury. I went to P/T 3 different times. After being on the BTK my pain started to go away. I believe the sciatica was due to enlarged lymph nodes in my back hitting nerves. Sometimes we have to turn to others or google to figure out what’s going on. I know we all don’t want to feel discounted with our symptoms. When I get overwhelmed I re-shift and focus on the miracle of these BTKs to keep us alive. I then try to figure out how to manage and live with the side effects and…..I’m kind to myself.
I feel your pain, “no one believes me”. Unless you’ve experienced it, people don’t understand what you’re going through. This is why this site is so valuable. Thanks
Lenny, you were correct, shoulder pain was frozen shoulder, this was resolve with exercise, knee pain gout, still on going and treatment on going, do you have any experience with this and any advice
I was diagnosed with CLL in 2011 when I had labs drawn to see why every muscle in my body hurt so much.
I've yet to find an explanation for the pain and it seems to be worse since starting V + O. I live on the Cox2 NSAID, Celebrex and recently increased from 200mg daily to twice daily. I also take the max dose of tylenol and #3-4 Tramadol daily.
I started Cymbalta because it is one of the few things FDA approved for Fibromyalgia. I does NOT seem to have made a difference.
Does anyone have any ideas for me.
I stay very active hiking, snowshoeing, skiing, lifting light weights but the price of pain makes it hard to force myself to go do these things. I won't stop these activities but would love to figure out how to not feel so much pain that always comes afterwards and lasts until the next time I get active.
I’m surprised you’re taking NSAID’s if you’re still on Venetoclax because I was never allowed the two meds together. It depleted my platelets massively and reduced my kidney function. Is it definitely muscle as opposed to joint pain you’re experiencing? I see you’re an orthopaedic surgeon and wonder what your professional take/suspicion is on this.
I’m uMRD after a course of I&V on a clinical trial and suffered arthralgia and myalgia throughout the treatment. Ibrutinib was suspected to be the culprit and I came off it after 15 months and continued with mono Venetoclax. My CK levels were very elevated and climbing. Have they checked your CK levels Tomaljoe?
Like Tomaljoe, I ran the gauntlet of random joint and muscle pains throughout treatment. Some days I couldn’t walk on one knee and the next I could tap dance on it! Sadly, since the end of treatment nearly 2 yrs ago, my joints have deteriorated significantly. I have spinal stenosis and live with daily pain. Apparently I have at least 3 collapsed discs. However, having systemic osteoarthritis, it’s been attributed to this and infection risk from very low immunoglobulins means they’re reluctant to try surgical techniques.
Frankly I don’t know if Venetoclax is implicated with these muscular skeletal issues but I’m pretty sure Ibrutinib was. Haematology don’t make the connection but medicine seems so fragmented and disjointed that this doesn’t surprise me.
Sorry no answers but just wanted to share the experience.
my oncology pharmacist said taking Celebrex was ok with Ven. This is because it blocks the arachidonic acid pathway at one step after standard NSAIDs and thus does not affect platelets, kidney and GI like the others. Unfortunately it is not as potent as the other NSAIDs.
I get all kinds of body aches and pains on O & V. Although now its the 7th cycle and am on solo Ven 400mg.My main side effects are Nausea, BODY ACHES AND PAINS. Joint pain, skin pain, muscle pain etc. Can't sleep on left side, nor right side and rear side just barely!
If immunotherapys were as numerous as ice cream flavors. I would have chucked O & V in the 1st month. Way too many side effects. But unforfortuneatly we do not have that many options. To be discarding our treatment for non life threatening side effects.
So for me, I have just gutted it out. But I will tell you, I can relate to your complaint.
I remember thinking the first week. How am I going to make it through this treatment for a year!
Well for me, its been a lot of prayer asking for strength to be able to endure the side effects.
I started in March 2023 and will be done in April 2024. I have a row of empty Ven bottles. Everytime I look at them I say to myself. Just a few more bottles to go.
I am hope you get a much needed break if possible. All the best to you.
Hi I too am recently experiencing muscle pain in my left upper leg. I am also on Acalabrutinib. Until reading your post and the replies I thought I had pulled a muscle. I have been to local GP and had an XRay, but still awaiting result ! I can walk but cannot go upstairs in normal way as it's too painful to put full weight on. So it's one step at a time, right foot first, then the left, rather than one after the other. I have been exercises to do but not sure if they will help,
All of my muscle and joint pain ceased when I discontinued the Brutinibs I tried. I had to call it quits when my thighs hurt so much I was unsure if I’d make it to the hospital employee parking lot at the end of my shift. Hoping you find relief soon.
In the beginning I got dehydrated one day after working outside all day and the most severe cramps possible . So when I sweat a lot I add electrolytes supplements to my water and drink extra on top of what we should
I get very stiff and loose range of motion but if I walk a good 45 minutes per day or have a very active day it greatly decreases. I also add stretching
I have multiple job related injuries & Zanubrutinib has helped wake some of them up along with these stormy cold damp days. Does Allupurinol work for anybody??? I haven’t tried them 100mg pills yet because of the nausea/vomitting potential side effects plus uric acid levels are normal @3.4 with 2-7 range for normal. Do they help with the muscle/joint/bone pains???
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