I have had CLL for 20 years and have been on Ibrutinib for 3 years. In recent months I have been suffering with aches and pain in the wrists, hand knuckles, knees, ankles and shoulders. I have been treating the symptoms with oral paracetamol and more recently pulse dosing with oral Ibuprofen when symptoms are more severe. I appreciate that I should not be taking Ibuprofen whilst on Ibrutinib, but have been advised that occasional dosing is OK. Some days I have limited pain that’s manageable, but other days require medication every 4 hrs. I am also aware that joint pain is a common side effect of Ibrutinib, but I have been fine up until the last few months.
I suppose that maybe my journey with Ibrutinib is coming to an end, thoughts?
I also discontinued IVIG treatment 2 months ago, as a result of COVID, might that be a possible reason for the increase in pain (I haven’t seen anything on line that could support this)?
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RobertCLL
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I feel for you Robert because I’m also suffering very bad joint/muscle pain on Ibrutinib. Interestingly, mine has also intensified since my IVIG had to cease in March due to the virus crisis. I’ve not read of a connection either but there could be one. Our bodies must be having a much harder daily fight to keep infection at bay!
I’m now also taking ibuprofen occasionally with the Consultant’s permission.
Newdawn. Interesting that you have the same experience as me regarding IVIG and joint pain. Did your consultant give you any idea as to what occasional use of Ibuprofen was? I am taking 200mg x 2, twice a day, trying to skip some doses on every other day.
He didn’t specify a dosage Robert and the agreement was for Naproxen but I have actually found ibuprofen more useful. I try to limit it to 400mg a day but in truth it’s not massively successful. Just takes the edge off. I’m hoping to see a rheumatologist once this crisis is over because this is a long standing issue for me which appears to have been aggravated by Ibrutinib and over a year off any anti inflammatories.
I’m in IVIG monthly in the Hospital Cancer Center. Masks and social distancing prevail - also temperature taken and questions via phone call day prior and when arrive for treatment - phlebotomists no longer take blood prior to treatment - RN’s do it so only stuck once then wait for result. They also have only a few people being treated at a time. All my nurses are Yale trained - came to Hartford from transplant unit. No one suggests stopping treatment due to Covid thank goodness.
I’ve been on embruvica almost two years and dealing with roving joints and hip pain. Oncologist just told me common side effect. Some days better some days worse.
Once in a while I take tylenol. It has helped a tad but not much, i wish i could take ibuprofen it might help but I cannot take with embruvica. There are many nights I cannot sleep well because the pain wakes me up. I have rubbed CBD ointment on joint sometimes .. sometimes it seems to help. Some days not too bad other days not so good. Sometimes I take low dose valium just to sleep.
Ginajetta. As you will know from the above that ibuprofen is not recommended whilst on Ibrutinib, but both Newdawn and myself have been told by our consultants that it's OK to take occasionally. What occasionally really means is not that precise. However, my risk assessment is that as long as my platelets are OK (150, low normal) and I am not seeing any abnormal skin bleeding, I should be OK (always knocking my hands and arms).
Yes - hip and knee pain over the past four months with 1 1/2 years into Imbruvica. So far, I am just suffering with it - no Tylenol or Ibuprofen. However, it's affecting my gait as I take my long Covid-19 walks and I plan to mention it during my upcoming consult with my CLL doc next month.
I too had really bad joint pain after about a year of Ibrutinib. It has gotten much better in the last 2 weeks and it appears that it is a temporary problem for most. I did have an injection for pain in my hip Friday but don’t know if it’s related to the medication or not.
I was on Imbruvica for 4-5 years... I had joint pain from the first weeks... felt I guess like I had RA. Only thing that helped me deal was oxycodone. I was on that pain med for a very long time. It was the only thing that took the edge off so I could somewhat function. Not sure if you want to speak to your doctor about it... but it did work for me. Best of luck!!
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