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CLL Support Association
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Ibrutinib and arm pain

Anyone else having to pain in forearm and upper arm? Best way to explain is that it feels like I've been hanging from just my arm. I have it only in my right arm. I'm left-handed, tho probably not relevant. On Ibrutinib for nearly 6 months.

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I get pain all over. just kind of moves around on and off. been on ibrutinib 2 mo

john

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I’ve been on Ibrutinib for 5 months and I also get pain that moves around. It hangs around for a couple of days then moves on to and area.

Pam

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Mmmm, it may not be anything to do with the Ibrutinib but you should definitely mention it to your Dr.

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Is it muscle pain or bone & joint pain? I'm on ibrutinib (6 months now) and I've had roving joint pain from ibrutinib. I get it in my elbows, wrists, fingers, knees, ankles and feet and more recently in my hips and shoulders. I'm told that means it's working so I kinda welcome it and take a lot of Tylenol. It was explained to me that it means my bones are releasing all the bad CLL cells. But if you're having muscle pain, that's something else I can't comment.

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Don’t know why I find your post funny 😄. Did they really say that pain is an indication imbruvica is working? Easy on the Tylenol it’s toxic for liver

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Yes they did! :-) And the pain coincided with my numbers spiking immediately after starting treatment, then reducing as my numbers dropped. Whether or not it's accurate, it at least comforts me to THINK I know what's happening. Don't burst my bubble! 😄

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Don’t worry I won’t burst your bubble. Imbruvica makes the WBC GO UP then they decline and go back to normal. my case my WBC stayed normal as I have SLL. My nodes went away though and now living happily ever after. I just need to avoid hot tubs.

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I have it but it was diagnosed as epicondylitis ( tennis elbow) I apply ice and wear a special band especially if I do heavy work that day. Ice 20 min. On and off. See a GP 33 months on imbruvica and all is good

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Hot tubs....?

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I caught a Folliculitis in a Punta Cana hot tub. Had to take 10 days of antibiotics.

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Poor you! I've been avoiding hot tubs so far but have never had proof.... Thanks.

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Depends which hot tub you go into. I was in Punta Cana! Never again! after that I caught sinusitis , bronchitis took 3 diff types of antibiotics that resulted in a pulsating tinnitus. Not the same as tinnitus. Took 3 months to feel normal. Ear is still messed up. Saw an ENT who thinks I may be going deaf. Tuesday is my 3 month check up with my HEMATOLOGIST. hopefully he can save my ear. I read somewhere lack of Vit B 12 or anemia can cause pulsating tinnitus

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Thanks all, for your input. I have joint pain, too, and occasional muscle aches, but this almost feels like tendons stretching in my inner upper and lower arm. True about Not overdoing Tylenol. I use regular strength, vs extra strength. Not sure if it makes a difference, tho.

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U r supposed to follow the directions. How many mg you take per day ?

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I’m a lefty too. I’ve been on Ibrutinib for 2 months now and have had the same roaming joint pain described by many here. It does occasionally feel more like a soreness than just a joint ache.

The very first time was about 2 weeks after I started the drug and was the worst bout by far. But it only lasted about 5 days.

Since then I’ll get an occasional ache - always in a different random joint - but it goes away pretty quickly.

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Embrace the pain! Myself it makes me feel alive or maybe I have a high tolerance for pain!!

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Considering what others are going through, it seems unfair to even bring up little aches and pains! I’m not sure about embracing it, but it’s certainly not a deal breaker! I’m thankful every day for these wonderful, life saving drugs!!

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I take back what I said about embracing the pain!! I don’t know if it’s the weather change but my arm is killing me today!!!

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I still have occasional knee and wrist hand pain after 16 months on Ibrutinib. The knee pain makes me limp. In addition to ice I have found relief from the regular Salonpas pain patches (not the lidocaine ones).

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Nearing 2 1/2 years on Imbruvica and I am still always amazed at the differing side effects we all experience...extreme fatigue, diarrhea, pain, nausea..... I'm apparently very lucky.... my numbers are excellent and the most troubling side effect has been brittle nails and splitting skin on my finger tips.

With that said...everyone's comments are helpful and important just to know what we might see happen

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Yes it is normal i am on ibrutinib on 11 months, the first 6/7 months a lot of pain on my legs, arms and knees now they gone...it’s normal

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