Shoulder pain unbearable : 2 months in... - CLL Support Assoc...

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Shoulder pain unbearable

2 months in with ibrutinin and struggling with immense shoulder pain. Spent 4 days on the laptop last week and from Friday haven't been able to move my shoulder. Worst at night, have to sleep on my back and physically lift my arm to move it.

I do wish this would go away as other than this, feeling really well.

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Sorry to hear 5hings are you taking the pills at night? I found by switching to the morning and taking the pills with breakfast made a lot of difference also try taking a magnesium supplement and a banana every day x

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Hi cartwheels. I have always taken them first thing in the morning but will try the banana. Thank you.

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You should get the correct diagnosis. Make sure it is not frozen shoulder more common in women.

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Thanks Shazie. Finally easing but now my ankle and knee hurt. I give up!

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I had to stop my imbruvica yesterday due to all the pain I was having. My joints were swelling in hands, knees, elbows. Very debilitating. Hopefully you will get past it. Just keep an eye on it.

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What about talking to your doctors about reduced dosing. It seems to be helpful to some though not approved yet.

lymphomahub.com/medical-inf...

There's also a clinical trial available with acalabrutinib for people intolerant of Ibrutinib.

Jeff

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Thanks Jeff

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I suffered with a lot with joint pain when I first started ibrutinib. Along with the pain I had very swollen knees for a week or so, which moved to swollen hands and finally to swollen feet. The symptoms worked their way round my joints and limbs until finally working their way out by the end of the 2nd month.

My consultant was reluctant to lower my dose of ibrutinib (I’m on 3 tablets a day) because if it stops working, my future choices are very limited. He said he would reassess things at my next appointment in August if I was still suffering. Thankfully all is well right now, though I have had a painful right shoulder for the past 2 days. I’m happy to put up with the pain though as it doesn’t compare to the excruciating abdominal pains that I was experiencing prior to starting the treatment.

If you can, hang in there - I for one call this my miracle drug and hope my body continues to respond well to it for as long as possible.

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I've been on it for 8 days now and pains started on day 2 in my right knee. Friday was even worse with pain in my shoulder, both knees and both elbows. Today it's in the finger joints causing them to cramp. We'll see what happens in the weeks to come and hope it gets less as time goes by.

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I hope it subsides soon. Co codemol or ibuprofen recommended. I have been pain free for 10 days and feel great now x

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