joint pain

[whitetail]

I have had CLL for 20 years been through 2 rounds of chemo and now on imbruvica the only real side affect for me is bone pain but I have had a knee replaced 10 years ago and it seems to bother it more has any one else had this problem?

[AussieNeil Partner Administrator]

Welcome to our community, Whitetail,

You will find a section of Related Posts, with lots of posts on this very topic, either to the right, or below your post, showing you are far from alone in having this side effect.

You haven't said how long you have been on Ibrutinib/Imbruvica, but you may find it reassuring to learn that Imbruvica side effects wane over time.

Neil

[whitetail in reply to AussieNeil]

I've been on Imbruvica since June and just turned 61 the CLL runs in my family my Dad had it and so does my younger brother he is in remition right now just a little history of our family

[Dom57 in reply to whitetail]

I have been on Imbruvica for almost 3 years. Pain comes and goes but the longer you are on it the pain is less. Get passed the side effects and it can help a lot.

[whitetail in reply to Dom57]

Thanks for the

Encouragement

[AnneHill in reply to whitetail]

Hi, we have a lot in common. I have had cll for 18 years and my Dad had it too. I hope no one else gets it. I am also 61.

I began Ibrutinib 12 weeks ago. I had pain in my hands, knees, ankles and back one after another. The pain would last around 3 days and move to another spot. The top of my right hand is painful today.

The first 3 weeks were the worst. I still get a bit of pain but it isnt bothering me. To begin with I couldnt drive and I had gout symptoms in my hands. If I could just get some energy I would be better, Anne

[whitetail in reply to AnneHill]

Thanks for the reply and yes it does seem to get better the longer you are on it . I'm hoping it starts to work my white count went from 140 to 370and has not yet come down but just had blood test yesterday and see Doc. On Monday hopefully with good news

[AnneHill in reply to whitetail]

I hope your results are good. Most people have a rise for the first couple of months. Iv been lucky as mine has gone down.

Its frightening when you have side effects, because you dont know how long they will last. Anne uk

[whitetail in reply to AnneHill]

Well got good news yesterday white count dropped to 296 and actually I have noticed I have more energy and not as tired as I have been

[AnneHill in reply to whitetail]

That is a really good drop in white cells. I feel a bit more energetic now. Iv had 2 urine infections and I think that was making me so lethargic and off colour. Lets hope we both start to feel better.

I had ivig today. Interesting talking to a man who also looks at this site. He had 3 years on Ibrutinib and is now on Venetaclax.

Lets hope we get a long time on Ibrutinib. Some in the USA have been on Ibrutinib for up to 8 years.

Good luck! Anne uk

[J_88 in reply to whitetail]

How old was your younger brother when he was diagnosed?

[whitetail in reply to J_88]

My brother was in his early 50s and I'm not sure what deletions is

[J_88]

wow 20 years awesome. Do you know your deletions?