Joint Pain

[Wahoowa]

I was on Imbruvica for 6 months and started having joint pain. My Dr switched me to Calquence to see if I would get any relief. Joint pain continues. It is affecting my sleep. PCP ran blood tests and saw nothing to cause joint pain. Any insights/advice? Thanks

[Corin850]

I always had arthralgia for the nine months I was on ibrutinib. But it moved around and different bits of my body were temporarily less able. On Balance it’s a great drug.

[Wahoowa in reply to Corin850]

Thx

[sllincolorado]

I too had terrible pain. It went away once I switched to calquence. When did you make the switch? Based on your prior post maybe its only been a few weeks?? You might be super sensitive to whatever is in BTK inhibitors that causes joint pain so maybe your doc would consider venetoclax or another alternative.

[Wahoowa in reply to sllincolorado]

Thx. It’s only been two weeks since I made the switch

[AnneHill in reply to Wahoowa]

Although I have arthritis pain, when I started ibrutinib I was in bad pain. It was so bad in my legs I couldnt drive and then my hands had gout. It did improve over a few weeks.

I have been taking it for a year and get occasional pain. This week I have a painful patch on top of 1 hand. Lasted 3 days. Then a small patch on bottom of my heal. I was limping for 2 days and still tender day 3. My wrists have been weak and tender now and again.

I can cope with it as its not all the time. Anne uk

[Kmegood in reply to AnneHill]

Hi

I see what you mean. I am on Imbruvica since April 13 . I have joint soreness not pain in my ankles and at times have terrible spasms in my legs . Sometimes the left one and sometimes the right . I cannot open a bottle cap without my hand locking up. Otherwise my body functions ok. I have 2 sessions of blood transfusions which gave me better energy . Blood pressure and hemoglobin was very low . My next follow up is mid July . I hope my blood counts are a lot better . I also had a colonoscopy appointment for next week and because I would have to stop the Imbruvica 5 days before I cancelled my appointment and will have the colonoscopy when I have more months on the Imbruvica. I was afraid to stop taking it even for 5 days . It is helping my lymphocytes and my white blood now near normal level.

[AnneHill in reply to Kmegood]

Hi, I understand you dont want the colonoscopy but is it a routine test or have you got a problem? Maybe your consultant will put your mind at rest. I have stopped the ibrutinib for a colonoscopy and another time an endoscopy.

I take iron tablets and my haemoglobin has improved but internal bleeding can cause low cells. Luckily nothing wrong. We can try to cope and hope the pains hold off.

Good luck, Anne uk

[Kmegood in reply to AnneHill]

Thanks for your reply . I thaught because I have been having a good week I didn’t want to stop the Imbruvica for 5 days . I am seeing my hematologist on July 14 and will have a blood test and the colonoscopy was to be on July 2 . So I can re schedule the colonoscopy when they have their new schedule in 2 weeks so I can book for end July or August most likely and by the way since I cancelled the July 2 colonoscopy coincidentally I had the past few days not feeling too well . Today I am very dizzy and tired even with a long sleep last night . So I am happy to have the least stress . My last cat scan was all good in April so I’m not worried about the colonoscopy right now .

[AnneHill in reply to Kmegood]

That sounds under control. I dont feel great but I didnt get much sleep last night. My body is out of routine. Not enough sleep at night and trouble keeping awake in the day. If I had a bit more energy things would be perfect. Anne uk

[Kmegood in reply to AnneHill]

Hi. I see what you mean. I find now I need a nap or at least lie down for an hour and then feel re charged. I never lived having to do this before this relapse . I could always be active all day till time to sleep at night and now it’s not the same anymore .

[Wahoowa in reply to AnneHill]

Thx

[sllincolorado in reply to Wahoowa]

Keeping my fingers crossed that it will just take a few more days for the Ibrutinib to get out of your system. Always suggest drinking a lot of water in these drugs.

[Mprm]

I was on Ibrutinib for three months and developed terrible pain in my back and buttocks. Thinking it was the drug, my doctor had me stop it for a week. I had no improvement. It turned out it was bursitis of the hips. I resumed the Ibrutinib and used ice and, after two months, it finally went away. We have no idea if the Ibrutinib caused the problem, and that is my point. It could be something else, especially since you changed to Acalabrutinib and your joint pain didn’t go away. Have you seen an orthopedist?

[Wahoowa in reply to Mprm]

Thx. I have seen an orthopedist.

[lamboman]

I developed joint pain during my Ibrutinib/Venetoclax trial. I also developed a rash prior to the joint pain. It's been 13 months since the last meds. and I am still MRD negative. I started to exercise walk/run 4-5 miles 6 days a week, the rash disappeared and joint pain is now 95% gone. Exercise is definitely the best medicine.