Monday, June 18, 2018

Adios Prednisone!

I had a great check-up with my rheumatologist last week!

My counts are the best that they have been in years! I get to discontinue the prednisone and pray that I can hold steady without a flare without it.

A few months into working on the Paleo diet, my glucose is the lowest ever recorded (since 2010). Even my red blood count was at the lowest end of normal, which hasn’t been the case since the beginning of 2016.

MCV (Mean Corpuscular Volume) was the only count that was high, which is the volume in a cell and I have no idea what that even means for me other than it’s been high since the fall of 2015 (which is when I was last on prednisone and had started taking Azathioprine again).

Oh, and no Lyme’s disease (I found a deer tick stuck in my leg a couple of weeks ago), glad that the lab was able to check me out! Those suckers are sneaky!

My rheumatologist was excited about the post-surgery Cheez-it weight that I have lost so far and was super impressed with my current daily step-average.
We talked about scheduling in a little more rest time, sunscreen and my ongoing struggle with walking up stairs.

Trouble with stairs is pretty standard with dermatomyositis and she wasn’t surprised to hear that even when I have been at my best in the past few years, those damn stairs are never easy. That’s okay. I can live with that.

She shared with me that she would really like it if I never used Azathioprine again, as the risk of developing pancreatitis again could be devastating. I agreed, however shared that it’s been tough to have my hands roughen up again and I felt that the timing of my flare was more than a coincidence. 

We discussed keeping a drug called Cellcept in our back pockets for future need. IVIG being an absolute last resort (thank God). 

Cellcept is another immune-suppressing drug that just focuses on a different molecule/protein/antibody (obviously, I forgot the word…) than Azathioprine. I’m not super thrilled about this drug, but we’re running out of options. 

IVIG is an IV immunoglobulin treatment that uses donated and cleaned up blood plasma and it's antibodies to [hopefully] block the immune system’s destruction of muscle cells. There is a pretty high rate of meningitis with IVIG, which can kill people with suppressed immune systems like me, so this is a definite last resort drug. 

She was honest about hoping that I could hold without it, as she worries about keeping my immune system so low all the time. I share her feelings, as I can’t ever seem to hang out with kids without getting a cold that lasts for weeks, which is a huge bummer.

We’re hoping that I can make it to October on Methotrexate alone, and then my next Rituxan infusion will sort of reset my system and set me up for success in the future. I like this plan, even though I’m also terrified of it.

Hopefully, I won’t have to see her until my next infusion in October!
If you don’t hear from me, I’m enjoying the summer and hope that you are, too!



  1. This comment has been removed by a blog administrator.

  2. Hi maren I’m under investigation for dermatomiosis (can’t spell it) is there any chance I can message with you?
    Thanks donna

    1. This comment has been removed by the author.

    2. Hi Donna, I'm happy to respond to questions about Dermatomyositis here in the comments.
      You can also use the seach bar in the upper left of your screen to search for keywords or topics. Hope that helps.