Brukinsa for Waldenström Macroglobulinemia User Reviews

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

"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

"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

"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."

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

"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."

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

"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!"

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

"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."

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

"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."

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

"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."

• Ana...
• April 19, 2024

"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

"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

"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."

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

"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."