Midostaurin for Systemic Mastocytosis User Reviews
Brand names: Rydapt
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.
- AndrewD
- 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."
- harose
- Taken for 6 months to 1 year
- May 19, 2017
Rydapt (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."
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- Drug class: multikinase inhibitors
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Rydapt (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 rash’s, 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!"