Sunday, November 29, 2015

November Update


It’s almost December and I have to be honest, I’m ready for a New Year. I certainly don’t want to wish away the next month, but I am definitely ready to start feeling better. The past 7-8 months have been a struggle that I am ready to move past.

On Tuesday, I’ll be heading in for a Rituxan infusion, my first of two rounds. This drug is an IV administered infusion with the potential to kick my flare into a remissive state. I will receive two rounds that will last 6 months. The hope is that this drug will give my flare a kick in the ass, and by the time it wears off, my other two immune-suppressing drugs (Methotrexate and Azathioprine) will be fully on board.

My last labs were mostly clear, so it’s likely that my other drugs are starting to work, but after talking about it with my Rheumatologist and my husband, we decided to go ahead with the Rituxan infusion and not wait any longer for the flare to calm down with the other drugs alone. I have quite a few friends in my myositis support groups who have had great success with Rituxan, so I’m hoping that it may be able to help me, too.
11/19/15 Labs
The labs look good. No liver, kidney, or blood cell count abnormalities. The muscle enzymes are normal. The inflammation marker, c-reactive protein, is normal, has been elevated since September. The sedimentation rate remains normal. The blood sugar is mildly elevated.

Since my initial diagnosis in the summer of 2010, I have always felt that I could deal with anything, provided I had all the information that I needed to understand. It’s the unknown that is always the scariest. I have to admit that I am scared. While the worst of the potential side effects of Rituxan are generally reserved for those who have much more serious conditions, such as lymphoma, or are on much greater doses than I, reading “death within 24 hours” is not something I’m used to encountering when I research my medication information. I definitely wondered whether I should check my pants after reading that.

The past months have included some of my darkest moments, where I truly wondered if I could handle any more of this disease. I have felt weak, isolated, and at times like a stranger to even myself. I am ready to move on, and so I am trying to be brave. If this infusion can help me, I know that I need that help now.

Brad will be joining me for the 5 hour infusion and my coworkers have been kind enough to cover my shifts so that I can also have a few days to recover, as it’s not uncommon to have flu-like symptoms for a few days afterwards. I’ve got a new pair of jammies, a season of one of my favorite shows to watch and my pups, who are always the best little nurses a gal could ask for.

I’ll be sure to update when I’m able. I will then have the 2nd round two weeks from the first. Same scenario, although I may need another season of my show by then!

As always, thank you for your love and support. Sending warm wishes to you and yours. The cool weather and fresh snow outside my window brings a smile to my face and I hope that the same rings true for you!



  1. Oh Maren, sounds awful! Good luck and I hope 2016 treats you better.

    1. Thanks for the kind note, Brian - and for always cheering me up and making me laugh - you're so good at that!
      I hope that 2016 is great for us both!

  2. Thinking of you, hope this first week has been kind to you, xoxo