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Steroid taper issues

It seems that there are a few of us that have an issue with prednisone tapers that I just assumed was me-every time I drop down to the next lower dose, my peak flows  tank and I have problems for a couple of days before they seem to rebound-at least until I drop to the next dose.  My post hospital taper is ugly-80mg/day for 3 weeks before I even start to taper it off.  The total taper-down to 5 mg every other day for a week before finally being done-take almost 8 weeks and I've noticed that ever dose change, I have these issues.  My dose drops are typically only 5 mg at a time so I'm not taking big drops.  Anyone else have this type of issue?

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  • Jen

    I remember @GigiGibson mentioning this issue.

    Thanks for starting this topic!

  • GigiGibson

    Oh boy do I know. I went to endocrine today because my asthma doc said he never has people on pred more than a couple weeks and I just don't fit in that. I can't drop 5mg at a time without visiting he– and buying a couple t-shirts and it doesn't always last. I'm babystepping 1mg to 2mg per week at a time. Still may have the two days of attacks but manageable. I'm officially on 14 and will go down starting tomorrow to 13. He said "there is something weird wrong with you" to my face today and I cracked up and agreed. I had just told him about when I'd try to go from 40mg to 30mg I'd have the hip and knee pain kill me in the wee hours of the night. It's a documented issue some folks have but his honesty was so hilarious. He basically has only had one asthma pt as bad as me and told me maybe I need another opinion from Duke pulmonary since my other doctors couldn't help me. Gees. He is like a long lost cousin, thinks someone is missing something. I do believe that there are doctors somewhere who have had weirdos like me (uh hem, us) that could say "yeah! I had two patients like that and here is what worked!"  Oh I wish. That one other pt , she was morbidly obese, 50ish, lifelong asthma, diabetic and guess what, xolair  worked for her. Got her off five years of prednisone. Bless her, I'm happy to know it.

  • Pljohns

    I agree totally with you-I've never had 1 doctor even remotely admit they had never had someone with my type of asthma. I've had 3 docs flat out tell me they wouldn't take me as a patient-guess we are all "weird"

  • K8sMom2002

    Ouch, PLJohns, that bit about not taking you as a patient … that hurts!  And no, I've heard of many, many of our members struggling to come off Prednisone, so you are not alone.

    Gigi, it is an odd feeling for a doc to tell you that you are different or weird or one of a kind, but with DD we've gotten that a lot: corn allergy, rare bleeding disorder. In fact, she winds up kind of the star of the show with residents at the teaching hospital we use because she's someone they're not likely to see again in their practice. 

    Duke may not be a bad suggestion at all — all it takes is ONE creative resident or doctor to come up with an out of the box suggestion that can help turn things around.

    I'm curious about the baby-stepping tapers … whenever I've been on a taper (and I've been so lucky, mine and DD's have been short), it was in pre-set drops based on the pills I was scheduled to take. How do you do the 1-2 mg taper? 

    I think it was a great idea to try the endocrinologist. Do you think a referral over to Duke and a team approach between pulmonary/allergy & immunology/endocrinology might help?

    PLJohns, something similar might help you. What teaching hospitals are you near? 

  • Pljohns

    I live with UAB-and they won't take me-been there, done that and have the letter for it.  Aside from a trip to Jewish National in Denver, no other options and that's just not going to happen for insurance reasons.

  • GigiGibson

    I have talked with the clinical research coordinator at Duke and the one doc on staff there that she said is really an asthma expert is leaving this spring so she didn't have anyone she'd recommend as a second opinion having been told my story. 

  • Shea

    I have found this article to be helpful for me (I have Churg strauss syndrome and its a css site, but its really about steroid tapering and sctivating the adrenals). 

    edited to remove full text from post ~  jbb
  • GigiGibson

    Yessss, I read this twice recently, some of the reasoning behind my meat re-entry. WAHLS also talks about feeding the mitochondria and gut microbiome so I may getting it.

    On another subject regarding high doses of vitamin c  ( I started Wednesday) Sugar competes with vitamin c for cell entry. Funny thing is on my local news channel this week they advertised one of the stories I read about vit c for sepsis. Seems like a low risk and potentially awesome action item. I'm doing 3000 mg per day. 

    My doc says only at 3mg or less of pred will ACTH be accurate. (-back to the subject)

  • Jen

    Shea – Thanks for sharing that resource.  Lots of good info there.  Note that I edited your post because it was a copy of the entire text.  If there is a paragraph or 2 that you'd like to highlight and quote, that would be fine.