Monday, November 8, 2010

Pass the chap-stick...

Stupid disease. When the drugs are high enough I can often forget that I have some serious issues. However, I'm entering that phase in Prednisone taper (again) when little syptoms are starting to peek through. All of a sudden, everything is so dry I can't stand it. Eyes, skin around eyelids, inside of nose, inside of mouth, lips, fingertips. Flaky rash firing up around my eyelids. Muscle pain/cramps starting to be more frequent. They seem to be worse in the week or 2 immediately after I drop a milligram. Nothing that's terrible or that I can't live with, just annoying autoimmune overlap symptoms. The worst part is knowing that they are indicative of a larger problem that is closing in. This is my second time through the cycle. Part of me just wants to go ahead and just let the flare happen so that I can go up on drugs again, instead of having an uncomfortable 3 or 4 month gradual slide. But that wouldn't solve any problems, the whole point is to try and come off of Prednisone. Does any of this sound familiar? Anybody else on this roller coaster?


  1. I've not been blessed enough to gain the strengths you have (from what I can tell in your blog) and then loose them again in a flare, but I can definitely relate to the side effects of the medications that are suppose to be helping us! And, I can't stand the Prednisone roller coaster. I've been as high as 80 mgs a day, currently at 20mgs. But every time I've gotten this low I've had to go right back up due to increasing symptoms.

  2. I have been on moderate to high doses of Prednisone for going on three years straight without a break.

    Prednisone has caused me to have a knee fracture in 2009, and I finishe last week completing Cataract surgery on both eyes due to prolonged use of Prednisone.

    I go monthly for IVIG infusion, but that alone will not control my CK level. The doctor has left me taking 10mg of Prednisone and my CK remains slightly elevated.

    I envy all of you that can get your Prednisone level below 10mg. After trying 6 times without success, I think I'm stuck with Prednisone until something else comes out for Polymyositis.


  3. Prednisone did not even work for me at all. I cannot even begin to understand how you can run - I can hardly walk and I fall over often. i exercise daily but they are like what they give people after a stroke