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Thread: (Finally) Some Great News

  1. #1
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    Default (Finally) Some Great News

    Two years ago I started seeing an endocrinologist at JHU to find out if I could ever get off pred. I'd been stuck at 2.5 mg for several years and couldn't taper without my adrenals shutting down. (I didn't need it to control the Wegs.) She switched me to hydrocortisone for 3 reasons: it functions a bit more naturally than pred, you can do adrenal function lab tests while on it, and if the dose is low enough it allows the adrenals to start functioning.

    I definitely felt better on HC right away. Pred--even at a very low dose--makes me very weak. I'm just really sensitive to it. Even at 2.5 mg I still had a moon face and couldn't lose any weight at all. My first adrenal function tests were awful. The endo was optimistic and said it can take a year for the adrenals to come back on. We re-tested every 6 months and they just wouldn't play. Finally last fall I started taking an adrenal supplement that doesn't contain cortisol, but heals the glands. (I'm not going to say which. You MUST do this under a holistic doctor's care. Someone who really knows adrenal stuff) Slowly my adrenals started waking up. And finally, as of this month they're awake! I've begun tapering the HC and should be completely off in 10 weeks. I sensed they were back on, as I'd begun to lose weight without really trying. I've lost 13 lbs since May!!

    A bit of my history:
    I first started pred with pulse steroids (ie, 1,000 mg IV solumedrol = 1,500 mg oral pred for 3 days) and went on to the usual high-dose regime after that. 60 mg, 40, etc... for several months. When I tapered off, I never felt okay again. No one would listen to me. Once when I was hospitalized for pneumonia a doctor did an AM Cortisol test (adrenal function) and I had zero. Zero adrenal function and I was walking around without being on steroids. No one would re-test me. I was off pred for 2.5 years like that. Even Dr Seo didn't believe that my adrenals were off but I knew they were. "Thanks" to a severe flare in 2009 I had to go back on pred and hadn't been able to get off again. Dr Seo was sure I'd never get off. I saw an endocrinologist who blew me off. Couple more years went by and I decided to see another. And there you have it. I haven't had functioning adrenals for SEVEN YEARS and they came back on.

    I included all these details in case someone else out there can benefit.
    Key points:
    - You can't switch to HC while you still need steroids to control the Wegs

    - If you've been stuck on low dose pred for awhile and you don't need it to control the Wegs, see an endocrinologist who specializes in adrenal issues

    - Don't let anyone (even a world-famous Wegs doc ) tell you it's impossible until you've given it a good try.

    - No one knows your body better than you.

    - The body has an amazing ability to heal itself when given what it needs.

    - No matter how long you've had Wegs and how much it's messed you up, you will be able to find something Woot-worthy.

  2. #2
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    Good for you, Sangye!! Hope the improvement continues.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    It's so good to hear from you and such great news!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    Sangye, you're a rockstar in Bhuddist attire. I love your spirit and the fight that you've given this nasty little hitch-hiker.

    I'm so happy to read this. I'm not on here much these days, but occasionally check out today's posts and poof, there you were. This is awesome, and I'd like to talk to you more about this so that we can maybe incorporate this option into the Autoimmune Disease Center that I'm working on. I want there to be options from every angle to hit this thing and this is definitely something amazing that needs to be a part of a healing process that not just Weggies go through but most Autoimmunies.

    I'm so thrilled to hear this great news and am sending you big cyber hugs from the other side of the continent.

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    Sangye, I'm thrilled to see you on here with this great news and your great explanation of the sequence of events! And a big congrats on the weight loss, too; that should make you feel better in itself. Woohoo! !! And I'm also glad that Marta happened to look in on us just after you posted. Together, with movers and shakers like you two and some help from the rest, we can beat this thing!
    Anne, dx'ed April 2011

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    I am so happy for you Sangye. This is such excellent news and totally made my day. I take it your energy level is also increasing? I suppose you wont notice a major change in your energy until you have been off the HC for a while.

    I should also be off pred in about 4 or 5 weeks after being on it for almost 6 years.
    Phil Berggren, dx 2003

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    Just glad you're feeling better!! Yea! Don't know if it will help some people, but I've been massaging my adrenals...easy to find: 1 inch either way of belly button, then 1 inch up approximately...you can feel them a bit when you've hit them...then massage for short periods of time. Did it work? I think so...no real probs with weaning pred at this point.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    That is super fantastic new Sangye.

    It has taken so long and certainly hasn't been worth all the pain and struggles you have gone through ........but WOW, look at you now.

    Let's get this wegs dog to sleep for good. Onwards and Upwards girl
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Thanks everyone! I'm really excited about this. There's a long chain reaction of good stuff that happens if I can lose a decent amount of weight. I could get off a few drugs and the increased intracranial pressure should resolve. And the still-never-diagnosed-but-we-know-it's-there sleep apnea should also resolve itself.

    Phil, I'm thrilled that you're almost off pred. I didn't think that'd be possible for you-- thought you needed it to control the Wegs. Hot diggety, man. I don't really have any increase in energy yet but we'll see.

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    Good news Sangye, I hope your situation continues the improvement
    ~ Bob

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