Ode to Prednisone: The A-hole that coined the term, “Love-Hate Relationship”.

Some possible side effects of prednisone:

• Abdominal or stomach pain, cramping or burning – check
• backache – check
• fast, slow, pounding, or irregular heartbeat or pulse – check
• full or round face, neck, or trunk – check
• headache – check
• increased hunger – check
• lower back or side pain – check
• muscle pain or tenderness – check
• muscle wasting or weakness – check
• nausea – check
• nervousness – check
• numbness or tingling in the arms or legs – check
• pain in back, ribs, arms, or legs – check
• red face – check
• shortness of breath – check
• skin rash – check
• sweating – check
• swelling of the fingers, hands, feet, or lower legs – check
• swelling of the stomach area – check
• thinning of the scalp hair – check
• trouble healing – check
• trouble thinking, speaking, or walking – check
• troubled breathing at rest – check
• unusual tiredness or weakness – check
• weight gain – check

The Prednisone "Moon Face"

HOWEVER! This strange drug also gave me the opportunity to get up and out of bed, move around, leave my house, see friends, and have a little bit of “normal” during this flare.
I do wish that I could fit my wedding ring on my finger, but I would rather be able to get out of bed in the morning.

As I have been on Prednisone long term though, I’m not sure if your body gets used to the dosage and requires more the same effect, but I have been feeling almost just about as shitty as before, but with all of the above side effects. I know that the flare is still active since I still have my Dermatomyositis (DM) rashes as well as some new ones. I also have Gottron’s Papules in new places, like my toes. They’re getting so bad on my fingers that sometimes I feel like almost want to rip them off.

I am really struggling with having my heart race while I’m trying to sleep at night, or feel like I’m out of breath just when I’m trying to speak. I also can’t handle gaining anymore weight, because it’s making my body hurt as well as my self-confidence. 

I saw Dr. Grandits yesterday and we decided that it was definitely time to get off that F-er we call Prednisone. We took chest x-rays to make sure that my lungs weren’t being attacked by the DM and thankfully, everything looked good. Thank. God.

Dr. Grandits believes that getting Lyme disease last fall is what activated my Myositis and we know that trying to get off of the Methotrexate (MTX) certainly didn’t help. But if we hadn’t tried, we would always wonder if I could’ve had Maybe Baby on my own or that he/she could have been ours biologically. It’s hard not to wish that I never messed with my medication, but that is all in the past now. Hopefully, it won’t be long before we can look back on this flare as nothing but a memory.

Nearly all of my labs are back from yesterday’s appointment already:

10/15/15 Labs:
The labs that are back are mostly normal. No major organ problems, no liver, kidney, or blood cell count problems.
The inflammation markers are essentially normal (likely due to the prednisone), the c-reactive protein is elevated.
The CK is normal, the LD total is normal.
The chest x-ray is normal, no finding of fibrosis or lung inflammation. Your symptoms are likely prednisone and weight related.
Continue the methotrexate and azathioprine, taper the prednisone as we discussed. 

As mentioned above, I have begun tapering off of the prednisone. Hopefully I’ll be off in less than 2 weeks. I am a little nervous about the flare acting up again, but I just can’t take the effects of the prednisone anymore. I’ll also be increasing my daily Azathiprine (aka Imuran) dosage to take along with my full weekly MTX treatment.

If we can’t get the flare under control by my next appointment in 5 weeks (or even less), we will consider doing a round of IVIG treatments (blood/plasma infusion) or try some other drugs, such as Tocilizumab (which is traditionally used to treat Rheumatoid Arthritis, but the Mayo Clinic is currently doing a study on it with DM patients), Rituximab, an IL6 Inhibitor or Cyclosporine. I really don’t want to have to get IVIG, but at this point I’ll do whatever it takes to get better.

I hypothesized to Dr. Grandits about when you think about getting sick, your body generally wants to rest. Taking Prednisone makes it so you don’t have to rest as much, so essentially it’s going against what your body wants to do to heal. To me, that would make sense as to why being on Prednisone long term is so hard.
Of course, since she is a brilliant doctor who has studied all the ins and outs of chemistry, biology and the way that the body fights disease… I don’t think that she liked my analogy, but nodded to humor me since it seemed to make everything make sense on my end. Haaha.

I can tell that my body is trying to heal though. The past few months have been spent either in the office working, or sitting in bed watching movies. I sleep like I’m dead, wake up and am tired again by 3 in the afternoon. I sit with my husband at the dinner table and struggle to keep my eyes open, then it’s back to bed. God, I can’t wait to get out of this flare.

Will update again soon, and will hopefully be starting to feel better.
M

September Update

I can’t even remember what I’m supposed to write about here. To say that my mind is a little scattered these days is the understatement of the year. If I remember correctly, this is the blog where I tell you how I’m feeling, so I guess I’ll do that!

August came to an end with me feeling a little bit better, but definitely not "Super Maren" like the way I felt on the initial mega dose of prednisone as in my last update. Like many good things, it had to come to an end. I closed out August fully tapered off of prednisone and within 48 hours I was in a full-fledged flare again. Rashes, weakness, the works. UGH!

Thankfully my next rheumatologist appointment was only a matter of days away.

 9/5/15 Lab Results The labs show the liver, kidney, and blood cell counts are good.  The inflammation markers show the sedimentation rate to normal, the c-reactive protein is mildly elevated.  The Anti-nuclear antibody remains positive, the titer has dropped to a lower level. The complements are normal.  The CK and aldolase are normal. The LDH is mildly elevated, was normal last check. 

The inflammation is present in my bloodwork, and definitely present physically. What this means is that my dermatomyositis (DM) is not under control yet with the methotrexate (MTX) alone.
I am out of breath after walking 3 steps, but my lungs sound good. Dr. Grandits said that my DM is just more than likely weakening the muscles in my chest, but I shouldn't be too worried at this time. 

So, until I can get back to baseline, I’m back on a moderate dose of prednisone for about 2 months, as well as a healthy dose of azathioprine (aka Imuran) along with the MTX. We went with azathioprine over a higher does of MTX in hopes that I wouldn't lose any more hair (I'd like to hold that card until the end)!
So far, I am handling the medications pretty well. I am blown up like a balloon and feel like a beached whale, but am otherwise tolerating the drugs well. Thankfully I work from home and my dogs don’t care if my leggings are the only pants that I have that fit.

Brad and I did meet with a high risk pregnancy doctor, however I left that meeting feeling completely defeated and ready to give up and cried the entire way home. I was exhausted to begin with, the meeting took 2 hours and the only positive thing that we left with was knowing that my ovaries aren’t “old” – whatever the hell that means.

This whole time I’ve been thinking that adoption would be a very possible option for us, until the doctor told us that we may not even be approved to adopt with my disease. We were then referred BACK to the first high risk pregnancy clinic that we went to for the genetic counsel which was beyond frustrating. F*ckin’ A!

Whatever. The goal here is to get me healthy first, so that is what we’re focusing on. My personal goal is for one year from now, to be back to baseline and feeling better and stronger than I have in the past 5 years (oh and back to a normal weight). I think that I can do it! Now I just have to wait for my medication to kick in so that I can get moving and get started!

My immediate goal though, is just to get to live a little. The majority of my summer was spent at home on the couch, so I am definitely ready to be feeling better.

This past weekend I was able to join my best girlfriends for a few hours of bachelorette party games and fun at a hotel, I then joined the team that I volunteer with for an afternoon event outside. I was completely exhausted beyond belief by Sunday evening, but getting out and laughing and having fun was totally worth it to me.

Of all the medicine that I’m taking, I need to make sure I have the biggest does of the giggles – there’s just nothing like it, and no one makes me laugh harder than my girlfriends. In fact, I’m still laughing about this past weekend 5 days later. I can’t wait to load up on more smiles in a week when my dear friend ties the knot.

So in a nutshell, feeling pretty crappy on the outside, but happy on the inside. My heart is full. Grateful every single day.

As always, thank you for your love and support. I hope to have made more healing progress by my next post!

M

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

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