Thursday, October 30, 2014


Late as usual, so we’re back within par for my blogging habits.  Grab a cup of coffee, this is a long one.

April’s labs were all very positive although I had been struggling in the beginning of the year.  Fast forward to June, I was ecstatic – I felt the best that I have in 4 years!  I felt better than I have in longer than I can truly remember.  Awake, alert, in less pain, more energy and best of all, I felt more alive.  These were all things that I would hope to feel with the great lab results like I had in April.

Immediately I start thinking of Maybe Baby.  Should I begin tapering off my medications so that we can try?  This is what we have been waiting for, right?  After some soul searching and a discussion with my Rheumatologist, we decided to let me enjoy what it feels like to feel good for the summer.  My rheumatologist also said that she’d like to follow my labs a little more while I felt “good” so that we can learn more from them if they spike again.  You may remember that aside from my inflammation that showed in my MRIs and muscle biopsy, the common inflammation markers were not very clear within my labwork. 

Brad and I both felt good about this decision and wasted no time enjoying the summer and taking advantage of the gift that we had been given.  Well, June and July were a huge learning experience for me, full of important reminders and a few slaps back to reality.  While I did feel really great, that this is all relative for a person like me.  This was something that after four years of learning to pace and care for myself was quickly forgotten in a month or two of excitement.  For example, I am used to getting about 10-20 minutes of activity in before I know that I need to stop and take a break, to avoid a flare.  “Feel-great” Maren decided that she felt good enough to skip breaks and after two months of just powering through is now back to where she started. 

Ugh!!!  I brought it on myself.  After months, years of not being able to just do things when I want to do them, I was chomping at the bit to get all kinds of projects done.  I wanted to finally walk my dogs every day, get outside, see my friends and family.  After not having an appetite for months, I wanted to eat all my favorite things, drink beer and just get out and have fun.  The most valuable lesson here is that no matter how great you may feel, “Everything in Moderation” is truly a statement to live by, and for a person like me this rule cannot be broken. 

August brings another [hopefully the last] small foot surgery to remove the wart from hell.

September arrives and I am right back where I was at the beginning of 2014.  Son of a!!

At my appointment in late July, I was just starting to feel the effects of my summer bender.  My lab results came back with an elevated LDH. However, Dr. Grandits said that she had been seeing issues with this test and wanted me to recheck just to be sure. 

If the LDH comes back high again, this is actually something to be positive about.  Since my DM markers haven’t always been right on, it’s been difficult to read my labs, and predict or anticipate any flares.  If the LDH is high again, this may be our “flare” marker to watch! 

Late July Lab Work: 
No liver, kidney or blood cell count abnormalities.  Muscle enzymes are normal except the LDH returned quite high. 

Due to a paperwork error, I actually never got my lab results in time to get rechecked before SURPRISE, you have Lyme Disease!  Yes, you read that correctly!  After a weekend of being sick as a dog with a sore neck and stiff, sore knees to boot, I crossed my leg and saw the tell-tale “Bulls-eye” mark on my calf.  Apparently the marking can be seen within a month of being bit.  The symptoms that I was feeling were in line with the 3-4 week marker. 
I did need to stop taking my MTX for 2 weeks while the Doxycycline did it’s job tackling the Lymes. 
Lyme Disease "Bulls-Eye" marking please forgive my hairy legs
I was actually relieved that it was Lyme Disease, since a common complication with myositis is Dysphagia, which is difficulty swallowing due to a lack of muscle strength in the throat and neck.  This is something that can really take a turn for the worse and in severe cases, even create a need for a feeding tube.  Scary stuff.  The Myositis Association reports that dysphagia occurs in nearly 1/3 of myositis patients.

I had already been on mega antibiotics for 2 weeks (prior to going to the ER) to help control my perioral dermatitis (not eczema as previously diagnosed), so I believe this is why the hospital results came back clear.  WooHoo!  What did not come back in the clear was my CRP, or C-Reactive Protein, which was rather high.

9/28 ER Lab Work:
CRP (0.0 - 0.8 mg/dL)     =1.4

About the antibiotics that I was already on continue to be on…
My skin condition has taken a turn for the worse, and the Triamcinlone cream that I usually use on my hands, can no longer be used on my chest or behind my ears because it’s beginning to break down my skin.  I have tried a million different creams for the area around my mouth and while they may work for a little while, the little red, itchy bumps always return. 

So, for an entire month (I’m halfway there) I am on antibiotics and I am to only use Free & ClearShampoo and Conditioner and Vanicream Soap for my hair and body.  Free & Clear Hair Gel if I need to style my hair.  I already use ultra-sensitive Cerave and Cetaphil on my face.  Also, try to use minimal makeup.  For any rashes that appear from the chest up, I am using Sodium Sulfacetamide Lotion, and yes, it is made with sulfur it does smell like farts.
Perioral Dermatitis
These photos are mortifying, however I know that there are quite a few readers of this blog who also have dermatomyositis, and if they make someone else feel better about their skin condition, then that is what is most important. 

The new cream wiped out the dermatitis on my face right away, although it got much worse before it got better.  Then, it tackled the area behind my ear, and now it’s working on my chest, which I want to rip off right now because it itches so badly.  Thank God I work from home and can be a hermit hiding in sweatpants rather than scare people off with my living Halloween costume.  Hoping that this crap is on it’s way out!

So here we are, October 30th. Other than my itchy skin, I have been feeling pretty good!  While my muscles have been weak, I have not been painful or sore.  I get tired easily, but I’m not in pain.  This is great for me!  

I saw my rheumatologist last week and left with some exciting news for my husband.  Dr. Grandits suggested that we try reducing my methotrexate (MTX)!  Now, this would be a very slow process of a 1 pill reduction of the regular 10 for the 3-6 months, then reduce by one more pill for 3-6 months, etc.  (My pharmacist goofed and gave me the pill form MTX last time and I was actually excited.  If I don’t have to take that damn shot, I’m a happy camper.)   Anyway, I went home and talked to Brad about it, and we decided to do it!  That would be one step closer to Maybe Baby.  I started to feel excited, like I was really helping us move forward to that time.

Today however, I got my lab results and am feeling a little defeated.  I haven’t had labs that looked like this in a while, and it has me on edge.

10/24 Lab Work: 
The labs show the muscle enzymes are elevated, the CK, aldolase and AST.  Surprisingly the LDH is normal, it has always been high in the past.  The muscle enzyme elevation may be related to the infection you had in the interim.  Lyme infection can cause myositis.  Will see if this corrects.  I would continue taking the methotrexate for now.  Other labs show a mild increase in the inflammation markers (sedimentation rate, c-reactive protein).  The blood cell counts are normal.  The Lyme testing is negative.  I would suggest rechecking the muscle enzymes in 6 weeks.

AST – SGOT (2-40 IU/L   = 50 (H)
CK (29-168 IU/L)               = 1427 (H)
Aldolase (<7.7 U/L)         = 11.2 (H)
Lyme Screen                      = Negative
Sedimentation Rate
(<22 mm/hr)                      = 22 (H)
CRP (<0.50 mg/dl)            = 0.59 (H

So, where do we go from here?  I guess just get to the next lab appointment in 6 weeks to see what is happening in my body.  Hold my head up and keep going.  Pray for strength so that my fears don’t interfere with the amazing life that is mine each day. 

Kiss my dogs and enjoy being able to spend my days working with them snuggled in by my side.  Hug my husband, my best friend and partner in life, my biggest supporter.  Dress up like Babe the Blue Ox this weekend and have fun with my friends.  And, not forget to take my rests when I need them.  J

Will update in 6 weeks when the new labs are in. 
XO, Maren