Joint Pain: Anyone else having finger joints... - CLL Support

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Joint Pain

Buckeye64 profile image
12 Replies

Anyone else having finger joints crack with pain and on ACP 196?

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Buckeye64 profile image
Buckeye64
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12 Replies
mgh348 profile image
mgh348

I have one inflamed sore finger joint. Appeared after i started acalabrutinib last October. Knees are stiff sometimes.

Justasheet1 profile image
Justasheet1 in reply to mgh348

Does the Doc think it's related to the drug?

mgh348 profile image
mgh348 in reply to Justasheet1

They are watching it, but it's not so concerning that they would consider dose reduction.

Justasheet1 profile image
Justasheet1 in reply to mgh348

Definitely glad to hear that.

Hoffy profile image
Hoffy

I am on imbruvica and have some joint pains but they've gone away over time. My doctor switched me to taking my meds at night and that has seem to help symptoms. Acp196 is very similar but suppose to be even better than imbruvica.

NoClew profile image
NoClew

Yes, and then the pain settles mostly in my hips and legs to the point where walking is very painful and difficult. Today I broke down and started my 4th flight of prednisone. NSAIDS helped but caused too much abdominal pain and potential bleeding. Tylenol useless. Been taking vicodin, but it just takes the edge off when the deep bone pain kicks in, it doesn't help much. The ACP is working, but I cannot stay on prednisone indefinitely. Still searching for an answer.

Buckeye64 profile image
Buckeye64 in reply to NoClew

I understand. I need the pain meds to sleep at night and function during the day. I don't like them, but they have become a necessity. My joints were hurting too bad. The steroids started it all by destroying my hips.

NoClew profile image
NoClew in reply to Buckeye64

Buckeye64, what do you mean by the steroids destroying your hips?

Trudy

Buckeye64 profile image
Buckeye64 in reply to NoClew

Avascular necrosis.

NoClew profile image
NoClew in reply to Buckeye64

Hi Buckeye64,

Are you getting any relief yet? I knew steroids had their dark side, but had no idea they could do that kind of bone damage. Thank you for the heads up.

Next week I am getting a growth hormone injection into my knee. It's platelet rich plasma, spun out from my own blood. Luckily my platelets are ok. I'm also trying gabapentin at night. Helps reduce the pain and improves my sleep. Still working on getting the right dose, titrating up from 300mg, without feeling groggy all day. Saving the norco for when I need it most during the day.

Hope you are doing better.

Trudy

SandiC profile image
SandiC

Buckeye,

I have had a sore left thumb joint for a few months on acalabrutinib... not so bad that I would do anything about it but it is always there. Knees and back sometimes also

Justasheet1 profile image
Justasheet1

Has anyone had rheumatoid arthritis ruled out? This is definitely drug related?

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