Off Prednisone

October 3, 2012

I feel a bit guilty this morning.  Yesterday, on Facebook, I posted that Hope was officially off Prednisone, and she is.   I am very grateful!   We all (those who love and know her) are rejoicing, however, I feel I left everyone with a sense of healing that isn’t there.  For that I’m sorry…it wasn’t my intent.  Again, we are very grateful to Jesus that she’s off this steroid!

Auto-immune diseases like Sarcoidosis are complicated and can change day by day.  Fortunately, Hope’s hasn’t, but getting it to ‘behave’ is another story.  We can look back through blog posts to see her medical and medicinal journey, but after 9 full months on Prednisone (steroid), she is off and functioning.  I can’t say she is doing great; on the contrary.  The body loves steroids, and if she were still getting 10mg a day, her joints would be very happy and she’d be hopping and skipping with no pain or swelling (probably).  However, over time it’s likely she’d develop a tolerance to it and need more or something else.  Prednisone’s side effects are not good, esp. for a child, thus the current decision to wean her off of them.  There could be a somewhat simple solution to her joint pain…giving her NSAID’s (Ibuprofen, Naproxen, ect.), but she has Nephrocalicinosis.  This is a build up of calcium in the kidney’s which happened in months or even years prior to us finding out that she has Hypercalcemia (high blood calcium; thus her injections of calcitonin every 12 hours).  The kidney’s filter NSAID’s and cause hers to start bleeding.  So, obviously those are a no go!

The hope was that once the disease was under control with the steroids, while simultaneously taking an immune suppressing drug calle Humira, that symptoms would be controlled.  After several months we were already beginning to lower steroid dosage while she took the Humira injection every 14 days.  My last post in July explains what was happening to her when weaning her off Prednisone.  Her joints are not happy!  I believe her left knee has some swelling/fluid and she can’t quite straighten it out.  She is still playing with her siblings, but I wouldn’t say she moves around and exercises like any other normal 9 year old.

We are trying to see if going with a Humira injection every 7 days would alleviate these arthritic conditions, but are still evaluating.

No doubt the Lord is at work in her life and ours; but we covet your prayers.  Praying for her physical body yes, but more so that the Lord Jesus will work in her heart, not allow her to be hard hearted or angry and to put her trust fully in Him!


2 Responses to “Off Prednisone”

    • David and Betty said

      Magnify the Living God!

      Thank you for “Shari-ing.” your post with us. As a mother you must be so frazzled at times – knowing what course to take to alleviate the physical pain in your child, but your trust in the Lord shines through. You may waver at times, but the Lord knows that too and blesses your whole family for your continuing trust in Him. You truly are a “mother.”

      We pray for all of you daily, and never intend to cease praying for all of you. And, we love you and your family dearly. His grace is amazing.

      David and Betty

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