CLL , Lyme and Ibrutinib : Hi everyone I am... - CLL Support

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CLL , Lyme and Ibrutinib

Sergi profile image
8 Replies

Hi everyone

I am wondering if anybody had to deal with this .

My wife started Ibrutinib 10 days ago and the first week looked promising. Nodes in the neck going down and minor belly pain.For the last 3 days , the Lyme symptoms that she usually keep under control with low sugar,gluten and dairy products came back with a vengeance, she can barely walk , joint and muscle pain , feelings of bad circulation make us wonder if those are the result of the Ibrutinib treatment or Lyme taking advantage of her low immune system

Thanks

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Sergi profile image
Sergi
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8 Replies
Jm954 profile image
Jm954Administrator

Sergi,

I’m pleased to hear that her nodes are going down nicely.

I’m afraid that musculoskeletal pain is experienced by approx 37% of patients on Ibrutinib and I know from experience that it can be very debilitating.

Hang in there if she can as these side effects will come and go, eventually subsiding but it can take some time.

Best wishes

Jackie

claire2017 profile image
claire2017 in reply to Jm954

Please call her oncologist ASAP to make them aware.

Sergi profile image
Sergi in reply to claire2017

Hi

I did and also a new blood test

Her wbc jumped to 200k which explain muscle and joint pain according to her hematologist

He was more interested in paletets which are back in range at 158

Thanks

Sergi profile image
Sergi in reply to Jm954

Thanks Jackie

Cindi73 profile image
Cindi73

Hi Sergi, I've been on Ibrutinib for 11 months. In the first few months my cll doctor n rheumatologist both agreed. The Ibrutinib caused my Fibromyalgia to flare up. It will get better. I wish your wife n you all the best. Hang in there. God bless. Cindi

Sergi profile image
Sergi in reply to Cindi73

Thanks cindi

moments profile image
moments

Reading my own info for Ibrutinib I would say it was the problem. Talk to your doctor immediately. This Target Pill works but there are some things that it irritates severely.

Sergi profile image
Sergi in reply to moments

Thanks

We want to continue the treatment so painkillers ,exercise and good diet is our stoke back plan !

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