August Update

Hard to believe that so much happened so fast. It all feels like a blur to me now, but I am in a 100% better place and I feel really good about the plan going forward.

When I last posted, I was in a full on freak out, and rightfully so. In less than a week’s time, I went from feeling exhausted to struggling to lift my arms which was terrifying. Sunday evening, I wrote my Rheumatologist in a panic. I went in for blood work and an exam on Wednesday and an MRI of the upper left arm on Friday.

The blood work surprisingly came back mostly clear, which is believed to be due to the fact that I hadn’t really come down on my Methotrexate (MTX) too much, and was also starting the Plaquenil. The MRI however, showed exactly what I was feeling, which was intense muscular edema (inflammation) of the deltoid muscle, edema in portions of the triceps, infraspinatus, and teres minor muscles (last 2 muscles in the back).

Before the MRI results came in, Dr. Grandits mentioned that the symptoms + blood work results could possibly equal some type of malignancy and thought that we might want to have a CT scan done, but we’re holding off on that now that we’ve seen the scans (for the time being).

As of the Wednesday appointment, I got back on my full dosage of MTX, discontinued the Plaquenil and began a “burst” of Prednisone that will continue for about 2 months. 

I’m about a week and a half in to the Prednisone burst and loving life. While I feel a little like the Incredible Hulk when I’m hungry, I am overcome with a sense of relief as well as this strange thing called “energy” that I haven’t felt in forever!

The best description that I can give for the first few days being on the mega-dose was like being electrocuted back to life like the Bride of Frankenstein! This has since subsided, but it was great for those first few days because it awarded me the opportunity to get out of the house, which I really needed for my mental well-being.

The only bummer now that I have acclimated to the drug a little, is that I have this sort of “ants-in-pants” feeling, but I still can’t do a whole lot physically, especially with my arms (which feel a little like they needed to get a little worse before they could start to get better). Fortunately, there are plenty of 5 minute jobs that I can do around the house when I’m feeling like I need to move.

Almost all of my Dermatomyositis rashes have started to disappear and my Gottron’s Papules are all beginning to calm down as well. (Exhales huge sigh of relief)

It’s not good to be on Prednisone long-term, but it sure feels good for the time being as we work on getting me back to baseline. I haven’t been having the overly-emotional response, but instead have been feeling super-happy and I’ve even been sleeping really well! I do think that a lot of this is the tremendous feeling of relief that I have knowing (and hoping) that the worst is over with. I now know that I pushed it too far and that I need to [remember to] consider myself in the “Maybe Baby” equation.

Our families have been extremely supportive in our decision to focus on my health over producing a grandchild, which feels good. Takes a little pressure off, even though I always knew that they felt that way.

I can’t thank my friends and family enough for their love and support. We’re not out of the woods yet, but I believe that I am headed in the right direction and excited about it.

Will update in a month when I check back in with Dr. Grandits.
Until then, “Thank You” and enjoy the end of summer.

Maren