Pin ball pain: What a week! Joint pain... - CLL Support

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Pin ball pain

KAS8 profile image
KAS8
11 Replies

What a week!

Joint pain bouncing around my body like a pin ball machine.

Wednesday night left knee starts to hurt leaving me in pain all day yesterday and over night. Can't get up stairs normally and lifting my leg agony. This morning it's fine!

Last night right wrist and middle finger start to ache and now can't twist my wrist. Last weekend it was the left wrist.

What is going on?

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KAS8 profile image
KAS8
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11 Replies
maggiesgrandmom profile image
maggiesgrandmom

Are you on Ibrutinib?

KAS8 profile image
KAS8 in reply tomaggiesgrandmom

Hi. I am on this and then the peripheral drugs - 2 months in now.

maggiesgrandmom profile image
maggiesgrandmom in reply toKAS8

HI If you are on Ibrutinib, this is the cause. It lasts 4-5 days in one spot and then switches. Mine eventually lessened frequency after about 1year. I got wrist braces for both hands because immobilizing it really helped. One time I got it in my forearm, knee and ankle all at the same time. I had to go on steroids and they helped alot but you can't do that too often. I think it is really a tendon pain or inflammation but they call it arthralgia. If you can bear with it, it should lessen with time.

KAS8 profile image
KAS8 in reply tomaggiesgrandmom

Thank you. Last weekend I popped to my local A&E and they gave me a sling as my fingers were tingling hanging down. I will only be on this for another 4 - 7 months thankfully as preparing for a bone marrow transplant.

maggiesgrandmom profile image
maggiesgrandmom in reply toKAS8

God bless you with this, you are brave and an inspiration to others.

Bo80 profile image
Bo80

I am new to this site. I started imbruvica 3 weeks ago and have had the same thing going on. I could hardly turn the steering wheel in my car the other day because of wrist pain. Today left knee is hurting but I also have a bad pain in right groin area. Does this also cause tender lymph nodes. This drug really causes some pain.

KAS8 profile image
KAS8 in reply toBo80

I was advised to take co-codamol or ibuprofen ( although I cant use the later as a haemophilia carrier but it is meant to be better).

I have a high pain threshold but boy does it hurt!

Not had any tender lymph nodes - all of mine vanished on day 2.

Hope you feel better soon x

Bo80 profile image
Bo80 in reply toKAS8

If on ibrutinib you can't take aspirin or any nsaids like ibuprofen.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toBo80

That is your doctor's call.

KAS8 profile image
KAS8 in reply toBo80

Hi. Sadly as I am haemophilia carrier, I have to avoid both aspirin and ibuprofen

Bo80 profile image
Bo80

Yes it is but a side effect of ibrutinib is bleeding.

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