Greetings All! Ame here. I have been steadily continuing to improve over the past 5 months so ... no news is good news! Graeme, how are you doing? I believe you're done with your tapering by now but for anyone else reading this, my taper was super slow - I will look it up but I feel like it was 5 mg per week. I was kind of shocked that they were taking you down 10mgs at a time. Pred is so powerful because of the systems it affects so as you come off of it your body has to swing back into action. It's not just the lack of medication, it's the need to restart systems that have been dormant (not making cortisol). Anyways, as my year anniversary arrived this year I found myself quietly celebrating my "Alive Day" - March 17th. When I went into the hospital on March 16th, 2022 things didn't look good. I'll never forget the feeling of waking up to the morning bird chorus outside my ER room the next morning. There were rough times but now I'm finally running again, working full days, and so grateful to be back to normal pretty much. I was wonderfully encouraged through this terrifying episode by the little tidbits I found online from other patients like you all and I want to be a beacon for others. I have NOT managed to fill in my blog much (LOL!) but still plan to. I want to make some short videos about how I managed the psychological challenges, how I lost the 10 lbs I gained on Pred, how I managed the medical appts., what worked, etc. so hopefully I can provide those updates over time. I was very lucky to have no pain or nausea the whole time - mostly just a really messed up brain and cranial nerve involvement (couldn't see or walk properly, fatigue, trouble swallowing, severe brain fog/fatigue, numbness in all sorts of places). Today, just over a year later, I have a bit of face numbness and a little collection of symptoms that I believe are lingering Prednisone side effects but nothing unmanageable. In fact, my whole life is better because I let go of so many things and (mostly!) stopped stressing. If you've been diagnosed with CLIPPERS or are wondering if that's what you have, know that there ARE people who have recovered. It is super rare, but that doesn't mean it's deadly or untreatable. For many months I barely felt stable enough to be away from home all day but I've just returned from a 9 day trip to Mexico and had no issues. Hooray! Hang in there.

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