Bone pain

[Lulu8581]

I have been on ibrutinib for 4 months and the past week I have been having pain in my knee and ankle. Has anyone experienced random bone pain and how long did it last?

[Hidden]

i get joint pains that rotate. i've been on it since january 2019

[TimHB]

"Roving joint pain" is a common side effect of ibrutinib. My doctors tell me that means it's working so I say "bring it on!" It was worse during my first 6 months and I took lots of Tylenol and CBD oil, but now, after 18 months, I find it to be mild and manageable - just a nuisance. It's far better than the alternative.

[PaulaS Volunteer in reply to TimHB]

Tim, I feel very uneasy about your statement saying “Bring it on” re the pain sometimes caused by Ibrutinib

We don't have to have pain, for ibrutinib to be working. The majority of people taking Ibrutinib don't have pain and this doesn’t mean the drug is not effective for them.

For you the pain was mild and manageable. For some people it is crippling – preventing decent sleep, preventing normal activities, continuing for a very long time.

If your doctor says the pain means the ibrutinib is working, they probably mean it’s a sign that the ibrutinib is doing “something” in your body. But the pain is not the “something” that we want or need. It’s an unfortunate side effect.

To sum up, I hope people won’t be discouraged by thinking that no pain means Ibrutinib is not working for them.

Paula

[Newdawn Administrator in reply to PaulaS]

The pain as a side effect from Ibrutinib can be pretty unbearable and unrelenting for some regardless of whether the drug is working or not. Some have to abandon the treatment altogether to preserve quality of life. I’ve experienced pain and immobility I wouldn’t wish on anyone made worse by the fact that I had pre-existing arthritis. The problem with BTK inhibitors is the inability to take anti-inflammatories with them and there’s times nothing else will do!

I agree with your comments Paula and hope that in the fullness of time, knowledge and research leads to reduction or preferably elimination of some of the pretty debilitating side effects of Ibrutinib.

Newdawn

[MonD in reply to Newdawn]

I hadn’t heard no anti inflammatory was with Ibrutinib. I know Tylenol is recommended but that does nothing for me. Is Advil not allowed???

[Newdawn Administrator in reply to MonD]

My specialist has made it clear I cannot take Ibuprofen/Advil whilst on Ibrutinib. They are contra-indicated together due to bleeding risks;

drugs.com/drug-interactions...

You’d need to ask your haematologist for advice. It’s caused me major issues being unable to take anti-inflammatories.

Newdawn

[MonD in reply to Newdawn]

Thank you. I started ibrutinib a week ago and have not taken Advil for a few weeks anyways due to some kidney issues. But it is the only thing that relieves my arthritis. Tylenol is like candy not medicine and a waste for me. What do you use??

[Newdawn Administrator in reply to MonD]

I’m using paracetamol/Tylenol and it helps marginally but some days I’m in great pain. The codeine doesn’t suit me and I’d only take oramorph if it was desperate.

It’s a real dilemma my haematologist admits he cannot resolve. I have such bad petechiae I’m unwilling to take anything that further stresses the capillaries. Platelets are just under normal however but neutrophils bouncing around under 2.

Hope you manage ok.

Newdawn

[MonD in reply to Newdawn]

Just on for a week. Blood spots are just a few. But rash all over torso. Seems to be getting worse and spreading.

[Newdawn Administrator in reply to MonD]

You have my shared understanding. Mention it to your doctor however. Six months in and my neck and chest are partially covered presently. It’s viewed more as a nuisance than a medical issue it seems.

Best wishes,

Newdawn

[MonD in reply to Newdawn]

Hi Newdawn. As info my rash spread all over body and my doc has taken me off the Ibrutinib for a few days and put me on prednisone. See him tomorrow to see next steps. Rash seems a little better since off it but still pretty horrendous.

[Justasheet1 in reply to MonD]

No, it acts as a blood thinner and effects the platelets. The ibrutinib is already thinning your blood.

My past CLL Specialist gave me Tylenol with codeine for pain because ibuprofen is such a “no-no”. I break the tablet into 4 pieces and a quarter of the pill is perfect. He couldn’t believe it worked but it does. Perhaps ask and take the least possible only when the pain is bad. My prescription is so old that it just expired. I would never want to get dependent on them.

Jeff

[MonD in reply to Justasheet1]

Thank you!! Will try if needed.

[AnneHill]

Hi, I began Ibrutinib 10 weeks ago and was shocked to get gout like pain in my hands for a week. Then I had roving pain in my knees, feet, elbows and in my back. Mostly the pain lasted 3 days before it moved to another place. Thankfully after around 6 weeks it has mostly stopped, although my left knee is painful today. I have a rollon treatment called Biofreeze which helps. I bought it from a local chemist but if you look online you will find retailers. It can be bought as a spray. I hope it is just a phase and things will improve for you.

The Ibrutinib has lowered my white count from 148 to 38 in 2 months. My Rbc is normal and platelets 115. If the pain shows it is working, I am an example. Anne uk

[Lulu8581 in reply to AnneHill]

You are right! Its a small price to pay when I see how much more energy I have from when I started! And I will look into Biofreeze. Thanks!

[bkoffman CLL CURE Hero]

Common, usually get better over time, but not always. Should start to wane by 6 months. If not consider asking doc about lower dose or switch to acalabrutinb. Brian CLLSociety.org

[wilhoitaz]

LuLu-Today my 98th day on Imbru-had intense bone pain 2nd month-it also seems to move from bone to bone-seen many comments that mimic ours. My wife an Angel applying creams and rub downs--when it gets to its worst I have used neo sporin with pain reliever -it helps -makes the pain semi manageable---it will likely make its way out finally when you visit your toilet-hang on you will likely look back on it and laugh in a few days or weeks-I even find myself in prayer thanking God for the awful cramps-I know that this is part of my process to get well-like breaking an egg for your breakfast

[W00dfin]

My bone pain became less frequent and intense after the first 6 weeks. After 3 years on Ibrutinib it recurs primarily in my left knee every month or so. I have found relief from ice packs wrapped in a towel for 20 minutes at a time. Also use the aspirin based Salonpas pain patches. I have lab work monthly and I cannot detect any effect on my low platelets which have been on a slow gradual upward trend.