July Update

Hello again, 

No sugar coating here, the past couple of months have been a b*tch and things have only been getting worse, and fast. Facts first, then the game plan.

5/28/15 Lab Work 

Labs are good. No liver, kidney, or blood cell count abnormalities. So no major organ problems such as inflammation or anemia.

The immune tests show the continued positive Anti-nuclear antibody, the titer has risen to 1:640, was 1:160 in January, the C4 complement has also dropped slightly, was 22 in January, now slightly below normal at 14. The remaining antibody testing is negative. So this can reflect more immune activity as you also experienced with recurring rash and constitutionally not feeling well.
The inflammation markers are okay, the c-reactive protein very slightly up. The vitamin B12, vitamin D, and iron levels are normal.

The muscle enzymes are normal as well. The thyroid is normal.

Will let you know when the send out labs returns. You can hold off on the MRI's for now until that testing returns. Let me know.

Continue the methotrexate at 7 tabs weekly. You could consider switching over to hydroxychloroquine daily and continue tapering the Methotrexate. Hydroxychloroquine is also an immune modifying medication that can be used during pregnancy. You were on it in 2011 for about a month had complaints of diarrhea, stomach upset, and rash. Since all muscle enzymes and major organs are stable could retry but go very slowly. 

UPDATE – I did begin taking Hydroxychloroquine (aka Plaquenil) right after this message. Nausea, headaches and “foggy” mental function started right away, as well as additional skin irritation and new rashes.

6/17/15 Dermatologist Check-In

I cried “Uncle” and got in to see my Dermatologist a couple of weeks early since the burning rashes on my body were making it very tempting for me to rip my skin off. We biopsied my arm and the results were consistent with that of Dermatomyositis (DM).  

I’ve since been back two more times for cortisone injections at the site of some of my more painful Gottron’s Papules and while it does seem to help take some of the sharp pain away, it doesn’t last very long. 

DM rash spreading across chest and upper right arm, & shoulder.

Gottron's Papules on Right Elbow

Gottron's Papules on right knuckles and fingers

DM rash on upper left arm with biopsy location

DM rash over left forearm

DM rash across upper back and over right shoulder and upper arm.

July Updates:
I emailed Dr. Grandits late on Sunday evening, the 19th asking her if she could either get me in the next day, or if I needed to go to the emergency room. I was in a full blown, 5 alarm panic after the weekend that I had.

Thank God Brad was home with me to help with the pups, make me toast and keep me from completely freaking out.

 7/19/15 

Hi Dr. Grandits,
 I’m not doing well right now, and I’m starting to freak out a little.

Aside from my skin rashes worsening despite treatment from my dermatologist including new steroid cream and cortisone injections, my strength is rapidly decreasing in my upper arm and legs, and the weakness is starting to make it hard for me to live my everyday life.

I’m nauseous and lightheaded, and I can’t think straight or get thoughts out like I normally would. I’m easily out of breath and tight in my chest as well, which I think is due to anxiety.
As far as my current taper, I’m at 6 tablets Methotrexate once a week and 1 Plaquenil tablet every other day.

My dermatologist (Dr. Shafer) recommended getting additional medication on board to combat the skin issues rather than working every other week with her to “put a Band-Aid” on the symptoms. I now have Gottron’s Papules on my hands, elbows and knees as well as a full shawl rash around my back, chest and shoulders and purple rashes on my eyes.

Dr. Shaffer suggested speaking to you about Intermuscular Prednisone, Intralesional Kenology or IVIG.

Do you think that any of the above would help me? I’m also wondering if you think I should try to get in to see you this week, or if I should go to the Emergency Room or something?  

I don’t know what to do, but I’m panicking a little.
Any advice is much appreciated.
 Thank you,
Maren 

July 22 Appointment (labs to come):

Fortunately, Dr. Grandits knows me well enough by now to know when I’m being sarcastic or silly, or when shit’s getting real. The latter was true of the tone of my message to her on Sunday evening. She was able to get me in today, provided I hadn’t already gone to the ER.

Dermatomyositis can be scary, and get scary fast, so it’s important not to poke the bear. My symptoms have been a sign that my body is very unhappy and that the disease is starting to gain the upper hand. This rapid decline is not good.

This is not something to mess with, so Maybe Baby or no Maybe Baby, getting back on my full dosage of Methotrexate along with a 5 week blast of Prednisone is really the only logical option here. 
You can’t typically have a baby if you’re dead, and this isn’t something that Brad and I are willing to risk. I’ll be discontinuing the Plaquenil immediately, so maybe I’ll be hungry for something other than plain toast and Coke soon. I will also have an MRI of the upper left arm to track any new tissue damage or inflammation.

I gulped down my first mega-dose of Prednisone with a grin as soon as I got home and will take the remaining 4 pills of my MTX tonight and pray that it all soaks in fast. I can’t wait.

I cried the other day when I read a friend’s post about people not “seeing” her illness and giving her a hard time about her work status and participation in life events. It made me sad, because I miss my old life too. Another thing that I miss… how crappy I felt before starting this taper! 
I just thought to myself, I would give anything to have parts of my old life back, but I would also give anything to feel the level of “crap” that I felt before I started screwing with my medication. I knew what I needed to do.

We do still have an appointment coming up in August with a highly regarded reproductive doctor who specializes in high-risk pregnancies. We’ll see what he says about taking large doses of Prednisone while pregnant. If I seem to respond well to the 5 week treatment, this may be an option for me for pregnancy, and would not require any taper.

BUT, we will see. I am not going through this again and I will not experiment with my health in an attempt to get pregnant only to risk the life of myself and/or the child. I also need to recover from where I’m at now before we can even consider the next step. Right now, Maybe Baby is the last thing on my mind.

So, if you see me in the coming weeks, I likely won’t stand up to greet you, because I might already be worn out for the day. My face might be puffy and swollen; and that’s because of the Prednisone. If my hair looks like crap, it’s because I can’t hold my arms up long enough to style it, and I don’t even care anymore because I’m so tired.

If I don’t call or write you back, it’s because [aside from good intentions] I forgot or I can’t keep track of the 400 Post-It Notes I have everywhere to remind me all the things that I have been forgetting since taking Plaquenil. 

I’m working my way back, but bear with me on the way. I’m also 10,000 times more emotional than usual and it will only get worse with the Prednisone, so if I cry when we’re talking, don’t take it personally... it probably won't be the last time.

While it hasn't always been the case over the last couple of months, I am feeling like I'm in a good place and don't want anyone to worry about me. It does get a little lonely when you can mostly just sit at home, but I'm happy and discovering new ways to find my joy. Brad and I have gotten some good binge-show watching in and my online volunteer work keeps me on my toes. And, I have the cutest little nurses in town, even though sometimes they bark at me for treats.

Thank you to all those who love and support me. I'll post today's labs as soon as they're in. 
XO, M