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Midostaurin for Systemic Mastocytosis User Reviews

Brand names: Rydapt

Rating: 8.3

Midostaurin has an average rating of 8.3 out of 10 from a total of 3 reviews for the treatment of systemic mastocytosis. 67% of reviewers reported a positive experience, while 0% reported a negative experience.

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  • Mas...
  • Taken for 1 to 2 years
  • June 9, 2019

Midostaurin "I have a love/hate relationship with Rydapt, which I take for aggressive systemic mastocytosis (ASM). A year ago, we thought I had months to live. Well, I am still here and doing much better. I had lost 160 lbs in 6 months, my mast cells were out of control in most parts of my digestive system and bone marrow, and I had the rashes, twitching, and every other ailment that goes with ASM. I started Rydapt, and things improved, I gained the weight I needed to gain back, and the ASM has been responding very well. HOWEVER... this drug has caused a panic in me, twice a day! I cannot stop vomiting, it has progressively gotten worse and is now damaging my stomach. However, I still rate this drug a 7 for all of the positive effects it has had!"

7 / 10
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2 Report
  • And...
  • Taken for 6 months to 1 year
  • March 5, 2018

"Midostaurin reduced my fairly severe symptoms within just 3 weeks and has continued to improve both the key measures of systemic mastocytosis and also quality of life. I now have better than half of every day symptom-free with something approaching a 'normal' quality of life."

10 / 10
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0 Report
  • har...
  • Taken for 6 months to 1 year
  • May 19, 2017

Midostaurin "We have been in a single clinical trial, and it has improved the quality of life by 50% in the last 6 months, after having systemic mastocytosis (SMC) for 20 years."

8 / 10
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5 Report

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