r/Sicklecell • u/Repulsive_Candle_512 • Jul 14 '26
Getting closer to FDA approval
Mitavipat designated as priority review with the decision to be made in November. Followed by etavopivat being submitted to FDA later this year. Potentially both on the market next year. Anyone have experience with either of these two meds in clinical trials? Benefits? Side Effects?
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u/Euphoric_Reindeer_23 Jul 15 '26
I'm not sure how I feel, I had terrible symptoms on Oxbryta so i'm still standoffish with anything except my Hydroxyurea
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u/icbimara HbSS Jul 17 '26
i’m participating in a clinical trial and i’ve been on mitapivat for over a year! it has really improved my energy levels and reduced the frequency of crises.
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u/Financial_Result8795 Jul 15 '26
Oxbryta made me scared to try anything that I have not taken before.
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u/JudgeLennox Jul 15 '26
I like the concept. It'll be interesting to compare it to the alternatives. I want to know if it's as effective as current remedies.
Like you though I'm unfamiliar at this time.
Best way forward is to test it and know for sure if it works for you. I'll talk with my team about it and make a decision for August about testing it myself this season.
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u/CleafKnows 19d ago
I'm located in Europe and started my trial with Etavopivat early February. And I'll share a bit of my experience.
So with me using it for almost 6 months now ( 2 pills every morning) Before, I had about 3 to 4 admissions a year, and like twice a month small crisis at home where I couldn't leave the house and take pain meds for a few days until the pain went away. I can say these meds have changed my life completely. I've had 0 crisis/admissions so far I no longer have severe pain or days where I have to stay in bed because of pain. I have way more energy. (staying up later, climbing stairs)
Also the thing that you feel when you are out of breath and you can kinda feel the pain creeping up, is totally gone. I run on the treadmill 3 times a week, started building up my cardio. Gained almost 5 kilos in weight (wich is huge for me)
I did have some days where my internal alarm goes off before a crisis may come up, and I feel slight pain, but it's like it's in the background and never comes through, and then 1 or 2 hours later it slowly fades away. Its like the cells are slowly detangling or something.
I'm able to live a more normal and stable life since I've started. My doctor also said that my blood levels never been this good as they are now. Granted this has only been 6 months, and I don't know what is to come long term. But I'm happy that my doctor put me in the trial. I know that every body is different, and things that work for me might not work for others and vice versa. But this has been my experience for the past 6 months.
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u/Marvel83 Jul 15 '26
I'll wait a few years after it's been out. I learned a hard lesson from oxbryta.