Zanubrutinib for Waldenström Macroglobulinemia User Reviews

• glo...
• Taken for 1 to 2 years
• July 1, 2025

Zanubrutinib "Most things are good, except I have neuropathy. This in itself seemed OK following my first treatment 'CHOP.' However, since going onto Brukinsa in May 2023, I find that my neuropathy seems worse even though my IGM is very good. I also have an old injury in my left foot. No one seems to know exactly what the cause is, so I limp. This puts pressure on my right side, from my foot up to my hip, and I get pain in my hip, so I cannot walk above 50 yards without having to rest."

• Sid...
• Taken for 6 months to 1 year
• June 6, 2024

Zanubrutinib "Was totally fatigued and had severe weight loss. Two weeks on Brukinsa, noticed the difference. Taking 160mg in the morning and 160mg in the evening. After taking these for one year, my weight is back to normal, no serious side effects, did have some bruising at the start. Healed quickly."

• Joh...
• Taken for 2 to 5 years
• April 10, 2024

Zanubrutinib "I have been using Brukinsa for over two years and I am now having difficulties with weight gain and lymphedema in my legs and feet to the point that I am having difficulties walking and getting in and out of a seat, especially in cars. I am looking for help with little success."

• Bri...
• Taken for 6 months to 1 year
• March 6, 2024

Zanubrutinib "My doctor changed from Imbruvica to Brukinsa approximately 8 months ago. My IgM did improve slightly, but a terrible skin rash appeared all over my body accompanied with uncontrollable itching. I blame Brukinsa for that. I now need advice about what to take for my Waldenstrom's condition with fewer side effects."

• S s...
• Taken for 1 to 6 months
• August 27, 2023

"I am 81 years old. I was experiencing weight loss, no energy, shortness of breath, and feeling constantly tired. I am on my fourth bottle of Brukinsa and my symptoms are gone. I am gaining weight again. No side effects other than bruising easily, which could be attributed to my age."

• Lar...
• Taken for 1 to 2 years
• November 9, 2024

"Zanubrutinib has handled WM very well for me. All blood test results are within acceptable results. I was initially prescribed 2 capsules in the morning and 2 in the evening. My symptoms improved and I’m now taking 1 capsule morning and evening. Side effects most experienced are general fatigue, occasional constipation, occasional burning urination, and almost always have bruising on my arms and back of my hands."

• Tin...
• Taken for 6 months to 1 year
• August 19, 2024

"I had been on Watch and Wait status for my Waldenstrom's macroglobulinemia for the two years after diagnosis. While I didn't have any symptoms, my blood work for my kidney function started to come back abnormal as my IGM continued to rise. We started treatment to see if the kidney numbers would improve. They improved after one month, and my IGM dropped considerably. It's been nine months since treatment started, and I feel completely normal. I have lots of energy, and it's hard to believe I have an incurable blood cancer. The only side effects that I have noticed include bruising more easily and small purple/reddish pin-sized dots on my skin occasionally. Neither bothers me."

• Nan...
• Taken for 6 months to 1 year
• July 1, 2024

"I have been taking 320 mg daily for 6 months. So far, so good - no negative side effects, and my labs show improvement. My overall experience is positive - especially when comparing it to other treatments that included steroids. Just hoping it continues to work!"

• ssg...
• Taken for 1 to 6 months
• December 20, 2022

"My IGM has gone from 2400 to 285 in 3 months after going from 4000 to 2400 doing R-CHOP for 4 months. I feel much, much better than I have for the last 9 months. Some of my problems, I'm blaming the R-CHOP. The only problems I'm having are fatigue and joint pains. This could be my 75th birthday and the R-CHOP, but I really didn't have any real pain in my thumbs until I started on the zanubrutinib. And it seems to get much worse. My hands are very swollen overnight. I'm not able to hold a golf club."

• Gra...
• Taken for 1 to 2 years
• January 11, 2025

Zanubrutinib "My dose is currently 160 mg once per day. I have few side effects. Some muscle and joint issues, which are resolved pretty well by stretching, exercise, and relaxation techniques. It has given me my life back. I was using a walker when first diagnosed with lymphoma. Now I can walk, hike, and bike for an hour. Fatigue is definitely an issue, so I need to rest in between activities. While I can't just take off for a day like I used to, I am still living a good life. It is crazy expensive, but between Medicare, my supplemental insurance, and help from the manufacturer, I haven't had any copay. I'm so grateful."

• mar...
• Taken for 2 to 5 years
• May 22, 2025

"I have been taking Brukinsa for almost three years. For the first 12 months, I was on 160 mg twice a day. I experienced afib to the point of being hospitalized. Dosage was reduced to 80 mg twice a day. Afib went away on its own. Only side effects are fatigue and runny nose. IMG went from over 4,000 to 800 since treatment started and continues to fall slowly. Blood cell counts and kidney function are normal. Susceptibility to infections increased but has been controlled with a 28-day interval of gamma guard infusion. Leading a normal life."

• Lin...
• Taken for less than 1 month
• December 1, 2024

Zanubrutinib "After 6 B&R chemo sessions, chemo wasabi stopped due to a mutant cell that was blocking its effectiveness. After nearly 2 months, I was put on Brukinsa and have had little or no side effects. Slight runny nose, occasional minor back pain. I feel like myself again. Looking forward to my first lab since starting. I hope it’s working!"

• lin...
• Taken for 1 to 6 months
• December 29, 2024

Zanubrutinib "Been on Brukinsa for slightly over a month and have had no side effects. Energy level is high. No napping and going to bed at 10 PM. Have noticed an old running injury, bursitis, starting to act up again, but do not know if it is due to the drug or increased activity."

• Ano...
• Taken for 1 to 2 years
• August 15, 2025

"I've had this medication for 13 months now. It has definitely kept my WM effects under control, and as a result, I avoided chemotherapy. There are side effects, mainly upper body aches and pains, occasional breathlessness, and mild fatigue, however, these are minimal inconvenience when you consider the massive benefits I'm enjoying at no cost to me thanks to our wonderful UK NHS."

• Fra...
• Taken for 1 to 2 years
• February 16, 2025

Zanubrutinib "With TE thrombocytémie essentielle after 18 years (Hydréa). No longer supported, Hydréa replaced by Anagrelide. Plus MGUS (IgM) => Lymphome B with small cell CD5 négatif (Small B-cell lymphoma) = WM. Anemia. At the same time, change Hydréa to Anagrelide and Brukinsa started 8 months after. No problems, just reduce the Anagrelide dose from 2/day to 1-2-1-2 ... /day (pellets too low with 2/d)). So no problem after 2 years and IgM ~0.0 now. It works very well for my Waldenström disease. Regards."

• Nor...
• Taken for 1 to 6 months
• May 18, 2025

Zanubrutinib "On Brukinsa 2 months 2 pills am/pm Hgb up from 9.6 to 12.6 IGM down from 5200 to 1350. No more difficulty in breathing taking stairs. Energy and focus up doing a lot more. Normal muscle recovery after exercise. Large bruise on left arm from blood pressure cuff. 3x/week will go down to 2x/week. Small paper cut on finger bled a lot more. Small wound on sole of foot taking a long time to heal. Itchy skin rash on forehead using Cortaid. With Medicare and Kaiser California and being on low income PGE Care program cost $0.00 covered 100%. Otherwise cost would be annual deductible plus $234/month for the drug."

• Jon...
• Taken for 2 to 5 years
• August 4, 2025

Zanubrutinib "Tiredness, some joint pain, and bruising on my left forearm are the side effects I am experiencing. The drug is working on the disease, so all in all, right now the overall experience is positive."

• Ana...
• April 19, 2024

Zanubrutinib "I have been taking it for 3+ months and have no bad side effects. It is reducing my M-spikes and most of my blood values have moved back into normal ranges. I couldn't be more pleased!"

• Bud...
• Taken for 1 to 2 years
• May 10, 2024

Zanubrutinib "Taking it for over a year and I feel great. No side effects except some occasional bruising. IGM numbers are definitely lower than they were to start and approaching normal."

• Est...
• Taken for 1 to 6 months
• September 22, 2024

Zanubrutinib "After 4 months, blood work improving, m protein levels dropping from 5000 down to 1700, with a hemoglobin rise. No appreciable side effects so far. 2 80 mg twice daily."

• Kay...
• Taken for 6 months to 1 year
• June 29, 2024

"Very few side effects. Minor if any most days. Easy to take and simple to maintain correct dosage daily. IGM and viscosity going down. Pleased."

• Ste...
• Taken for 6 months to 1 year
• December 16, 2024

Zanubrutinib "Started 160 mg twice daily 8 months ago, IgM down to under 1000 from 5000. Hemoglobin from 8.5 to 15... minimal side effects. So far, so good."

• Pat...
• Taken for 6 months to 1 year
• May 4, 2025

"So far, excellent result. If offered, take it, best thing ever. Little side effect except wind for 3 weeks. Been on it 7 months, paraprotein at 10 will drop more, I hope."