Friday, July 23, 2010

5 mg. and counting!

So... I've been down to 5 mg. of prednsione for the past 3 days!  I know... those people that have been following my story can let out a "AMEN!" or a "WHOPPEE!"  Whatever you prefer.  This is a time to celebrate!  Come September 4 I will have been on prednsione for 2 years... and this week marks "uncharted territory" as my husband referred to it.  I have never been able to go this low!  So far it has been "okay."  I have a few, minor withdrawal symptoms, but hey... I'm still able to function and do stuff!

Everything in my blood tests is looking fairly good at the moment.  I have two things, my creatin k and my crp, that are still not "normal" but they're miles away from the point i started at, and both are slowly lowering. So if all goes well in August I will be able to go down to 2.5 mg. of prednisone and in September 0!!!!  Its crazy to think about that!  The only thing that could prevent me from going completely off prednisone is the fact that your adrenal gland naturally makes 5 mg. of prednisone... well being on prednisone shuts down your adrenal gland.  So right now we're slowly "waking" up my adrenal gland.  There is a chance that it might not wake up, so I would have to be on 5 mg. prednisone the rest of my life, which is not necessarily uncommon.

I continue to "run" in the neighborhood pool and try to do more activities.  The humidity has a major impact currently on my breathing condition, but I do what I can, which is more than what went on about a year ago.  I'm thankful for good days and even my "bad" days right now... as my "bad" days are NOTHING compared to what they were even 6 months ago.  I am a HUGE advocate for the drug Rituxin...without it I do not know where I would be right now.  Everyday, my husband and I are thankful for my Rheumatologist... she has been my advocate since day one.  Never once did she think we weren't going to be able to control this.

So... I'll leave you with a little "precious" story that has made me get by this week with a big smile on my face.  My sister-in-law, Kelly, told me that my little Kiki was in church writing notes aka mountains.  When asked what she wrote, she said, "I love Aunt Maggie."  Supposedly its in the mail for me, and I know its something I will treasure always.  It's little moments like this that motivate me to get better.  I have to be able to be energetic for her.  Come November, she is counting on me riding Dumbo with her at Disney World... and believe me, she won't let me forget that! :)  I always find it funny how God provides motivation in your life!

Hope everyone has a wonderful weekend... I know I will! :)

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1 comment:

  1. I am enjoying reading your blog. My healthy active 65 year old husband was diagnosed with antisynthetase syndrome recently. Although your struggle is scary it gives me hope that we will be able to cope. It took a while for a diagnosis since he only manifests the disease with ILD so far. It all started back in October 2010 with chest pains and he was started on steroids and other drugs quickly when it was discovered it was a lung problem and not a heart attack. He is down to 10mg of prednisone and is on cellcept. Your stories about your setbacks and leaps forward are comforting since we are in a setback phase.My hubby now has a bacterial infection in his lungs call actinomyces so he will be on 6 months or so of antibiotics. He is coughing a lot now but we are hoping it will clear up soon. I will pray for you and Chris. Hang in there beautiful lady!


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