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Ibudilast help MCAS?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by ebethc, Apr 5, 2017.

  1. ebethc

    ebethc Senior Member

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    Has anyone tried ibudilast for MCAS? Did it help? Did it help brain fog?
     
    Misfit Toy likes this.
  2. kangaSue

    kangaSue Senior Member

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    Brisbane, Australia
    ebethc likes this.
  3. ebethc

    ebethc Senior Member

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  4. kangaSue

    kangaSue Senior Member

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    Sorry, not something I know the answer to.
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    This is talked about on Health Rising. I'm interested, too.
     
  6. dreamydays

    dreamydays

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    I wanted to post here for anyone looking into ibudilast. I ordered some from Japan and it has no effect on me at all and no side effects. I might as well have took a sugar pill. It was definitely legitimate, so my conclusion is that this medication is completely ineffective in treating ME and reducing neuro-inflammation.

    As far as MCAS goes, I take montelukast and find it effective. I have also tried ketotifen which was ineffective in my case and gave me headaches. My partner who has ME and MCAS has had the same experience as me with regards to these three medications,
     
    ebethc likes this.
  7. ebethc

    ebethc Senior Member

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    same here..

    1) ibudilast had no effect
    2) montelukast is helpful
    3) ketotifen made me want to go to sleep.. I have energy problems already - so, I can't take anything that makes me more tired.

    THREE additions:
    1) Quercetin and Rutin are the best mast cell inhibitors for me (def better than any of the above or anything else I've tried)... I'm going to try bioflavanoids next.
    2) Wobenzym is an amazing general anti inflammatory... better than any pain meds I've tried
    3) Mega DHA (2:1 DHA : EPA) is amazing for pain and inflammation... for some reason, the reverse formula (higher epa) is not at all the same for me... both Wobie and Mega DHA reduce sinus inflammation and ocular pressure
     
    Avena likes this.

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