This blog is intended to chronicle my experiences with Polymyositis, a chronic autoimmune disease that involves the body's own immune system attacking and inflaming its muscles, resulting in debilitating weakness and other complications. I hope to provide a resource for anybody looking to others' experiences with the disease.
Friday, June 26, 2009
What-ifs addendum
The light bulb went on: I think I am experiencing some Prednisone withdrawal symptoms. I went from 80 to 60, and then 60 to 50 without thinking anything of it. But maybe 50 to 40 (which is happening this week) is my tipping point. After my little episode yesterday (a panic attack and crying outburst over a slight fever and some muscle soreness), I looked up symptoms of Prednisone withdrawal, and lo and behold, found: fever, muscle soreness, mental changes, and 'general ill feeling'. That'll cover just about everything that's ailing. I feel better being able to blame my hypochondria and emotional instability on something. It's not me, I swear. Chalk one up to experience and disregard yesterday's post.
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Maybe go down in smaller steps?
ReplyDeleteWhen my rheumy asks me to go down by 10mg/wk, I find it easier to go down by 5mg every 3-4 days.
At 20mg/day of Prednisone, my rheumy asks me to go down by 5mg/wk. I split the pills and go down by 2.5mg every 3-4 days.
When you get to 5 or 10mg, there are 1mg pills available, so you can taper off more smoothly.
Ask your doctor. Normally if you have a traumatic day, it is okay to pop an extra 5mg. After all, in nature your body would adjust the dose of cortisol it makes according to what your body needs. Just remember: (1) to go back to your normal dose of Prednisone the next day, (2) don't do this too often or you'll never taper off.
I'm really happy to hear your CK has gone back to normal.
ReplyDeleteThat is 1/3 of the battle. That is the hardest part too, because we have no conscious control over whether it happens or not. Either the drugs work for you, or they don't.
The next 1/3 is for it to stay normal while you finish tapering off your Prednisone.
You may have some relapses, but it is a very good sign that you on the road to remission so quickly.
And the final 1/3 of the battle is regaining your strength.
With your body starting into remission so quickly, from what I've read there is an excellent chance you'll make a good or even complete recovery.
The whole "sick" feeling was only bad for about a day. It's almost like I had just a little bit of a reaction to a 10mg reduction, and then it was over. I've experienced alot of new and different sensations throughout this disease, and each time I think, "ok, so that's what 'x, y, or z' feels like, now I know for next time." So, now I know what Prednisone withdrawl feels like, I'm prepared.
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