pain relief on Brukinsa

[Cdub32]

Am having joint, muscle, skeletal pain with the med..any suggestions for relief? I can't take alleve or ibuprophen due to bleeding concerns..tylenol does not cut it..

[johnliston]

I get the same thing. I just take Tylenol and wait it out. When I was on Ibrutinib it stopped after a few months

john

[Alex830]

You can try Claritin without D, it seems to work for a lot of people.

[CoachVera55]

My pain got so severe that it was one of the reasons I had to reduce my dose. Brukinsa Or Zanubrutinib has the best dose reduction possibilities, please discuss with your doctors if no other solution surface. The more I pushed through the pain first thing in the morning the sooner it left & I could enjoy more of my day. Hydration hydration hydration is always a good idea. I love my Vibration Plate, it helps. But walking & light exercise really helped too. I loved my lab results on that drug & I hope you can find relief & experience the best of that drug also #GODSPEED

[Cdub32 in reply to CoachVera55]

Thank you, Coach. I had such a miserable experience with CalQ that I really need this kind of encouragement.

[Cdub32 in reply to CoachVera55]

So Coach Vera..are you on CalQuence with those really good numbers or Brukinsa?

[CoachVera55 in reply to Cdub32]

I got chestpain 13 days on Zanubrutinib full dose 5/6/23. There were 2 ER visits 5/6/23 & 5/9/23 because I left the ER 1st time with no treatment even with CT Scan signs of Pleurisy so it progressed to Left Pleural Effusion, Pneumonia vs Aetelectasis. I stopped treatment for 6 days & took the steroids 40mg ordered & antibiotics I had at home.

I started back on Acalabrutinib, 1/2 dose, 100mg daily 5/12/23. I stayed on them 10.5 weeks & they slowly dropped my WBC from 81 to 30/40. I suffered with chestpain for a 3rd time & 3rd ER Visits 7/20/23 within 3 months because of an under treated infection & 4 doctors would not order simple antibiotics while watching my respiratory status declining. The ER doctor seen the stress on my chest & ordered a muscle relaxant.

Long story short even on Muscle Relaxants & Steroids my chestpain continued so I had a come to JESUS Moment in which going back to Zanubrutinib 1/4 the dose was decided, 80mg daily 7/29/23. I later discovered that my CT Scan & Pulmonary Function Test were abnormal & Pulmonary never informed me. I seen Oncology on Aug 2nd & she was only interested in referring me back to Pulmonary. I had a Mental Breakdown in her office. Left there & got a 10 day dose of antibiotics & then began to improve.

Met my CLL Specialist in August & her team did a repeat Echo & PFT which showed improvement & we doubled the dose in October. 1 week later I developed Pleurisy signs & I got antibiotics promptly this time 11/4/23. So WBC were in the 20’s & dropped to teens by December & by January single digits.

1/11/24 Hgb 10.8-13.3, Plts 74-109, WBC 81-8. I was great until March & starting putting on weight & experiencing horrible pain. My previous hip fracture went to bone on bone & a new foot arch collapse. My CLL Specialist suggested taking a break & I said no because I did not make a connection with the pain to the drug.

By May I had early signs of Congestive Heart Failure, Abdominal distension & pedal edema which a CT Scan confirmed. A June Echo further confirmed it Pericardial Effusion. The chestpain caused me to stop May 31, 2024. I’ve been off any treatment for 2 months now & labs are holding. My CLL Specialist with me twisting her arms said I won’t need a new treatment for 1yr minimally🙌🏾

I’m back to Wait & Watch, taking the best care of me & getting these 50lbs off.

I went to the Family Reunion & Church Health Expo. My 40th HS Reunion is next Labor Day

[Cdub32 in reply to Cdub32]

Good golly Molly!! Thank you for the clarification. Sorry that the heart/lung issues are there.

[skipro]

I'm sorry to Musculoskeletal pain!

Celebrex is a type ofNSAID that does not affect platelet function and bleeding in the way that other types like Aleve do.

You could check with your doctor to clear this, but a combination of Celebrex plus Tylenol can be very effective.

Good luck and God bless you on this journey

Ski pro