Myositis: A Misdiagnosed Medical Mystery - ABCNEWS.com

Myositis: A Misdiagnosed Medical Mystery: ABCNEWS.COM

Myositis is mistaken for everything from depression to rheumatoid arthritis.


This clip is still pretty vague, but informative nonetheless!
M

P.S.  Did you know that September 21st is Myositis Day?  Me neither!  The attached link gives resources for contacting your congressional representatives to encourage awareness of the disease.

Hello 2012

With each new year, there is the feeling of starting fresh, saying goodbye to the year past.  Although I am incredibly grateful for 2011, I was excited to welcome 2012.  

They say that your mind forgets pain; I believe this.  It is hard to imagine where I was a year ago today.  Although I still have days that are more difficult than others, it cannot compare to going through those days in the dark; not knowing what was wrong or what to do.  I still get a feeling of panic when I feel pain, or aches; but I know what they are, and that eventually, they will pass.  

I left 2011 trying to begin a new drug called Plaquinel, that would be less aggressive on my body, and allow me to take [possibly] during pregnancy.  There were a few stages of side effects that I needed to pass to know if it was for me.  Unfortunately it wasn’t, so on to plan B. 

People have been known to have taken Methotrexate (MTX - the drug that I currently use to control my DM) for upwards of 20 years.  The only problem that I note to my doctor is, that only gets me to 50; what am I going to do for the rest of my life?  Although there are not any other promising leads for new drugs to treat a myositis on the horizon, it has only been about 20 years since doctors began prescribing MTX to patients with auto-immune diseases.  Those 20 year MTX patients will continue to be documented as they add years to their original 20 - and I can follow that as I work on my 20.  If there’s a problem post-20, then we’ll deal with that later; sort of a “so-far-so-good” theory.  Works for me; especially since I don’t have any other options.  

I have switched to a lower, oral dosage of MTX (I was starting to have serious injection-anxiety).  I was on the equivalent of 10 pills via injection; now I am on 6. We will monitor my levels as I attempt to “maintain” on a lower dose.  If my levels look okay, we’ll move down to 4 pills.  Hopefully I can maintain my levels at this incredibly low dose for two reasons.  Firstly, because it will [hopefully] be easier on my body long-term.  Second, so that if we want to try to have a baby and I need to stop taking MTX all together, it hopefully wouldn’t be such a jolt to my system.  If I did get sick again while off the MTX, at least we know that a 1mL weekly injection should get me healthy and feeling good in time.  

It’s scary, but we’ll just have to cross that bridge when we get there.  For now, I am just adjusting to the medication change and continuing to work on managing the fibro.  One thing at a time!  

Good news with my little Pronto Puppy, his counts are were good, so he got to reduce his dosage of medication, too!  Still running around the house like a pup!  I am feeling good about 2012 as it has gotten off to a good start with a healthy and happy little family!

Much love to you and yours in the New Year!

Maren

The Hap-Happiest Season of All...

I was tempted to title this post “Winning,” but just couldn’t do it.  Since I last wrote, my diabolical plan seemed to have worked!  Completely ignore being sick, to actually cease being sick.  

The past few months have been great.  I have felt great physically and mentally, which I have learned is equally if not even more important.  The incredible thing, is that what I had felt, was being miraculously mirrored inside of my body.  

Just a couple of weeks ago I began a series of appointments to prepare for a important check in with my rheumatologist.  This appointment would determine if I could begin the journey to switch to a safer, long-term medication to control my myositis.  My first appointment was the super fun 2 hour session in the MRI, the next was a blood work series - that’s no big deal.  It was the 2 letters that came the following week that had me speechless (I know!) and in tears.  Ready?!  There is absolutely NO muscular inflammation left in my body.  My counts had finally dropped; several into normal ranges, even the never-going-to-change ANA* dropped 2 entire levels!!!  That means that there are less antibodies around in my body - that’s good!  I can feel this, too.  I can blow dry my hair without having to drop my arms and rest.  I can run up and down the stairs without a second thought.  It’s amazing.

My mind is a whirlwind thinking of all the things that must have been going on in my body the past year; our bodies are truly the most incredible machine. 

So what happens next?  I just started my 6-12 week “side effect trial” of Hydroxycloriquine, or Plaquinil, an anti-malarial drug that has been found to more safely treat several auto-immune diseases more long term.  Watching for the possible side effects is a little daunting; Week 1: gastrointestinal [oooh, that sounds like fun], Week 2-4: rashes, Week 4-8: hair loss.  As much fun as the aforementioned sounds, I am excited for the idea of moving to a safer drug.  And yes, I could become pregnant on this medication.  

I am a little scared about switching though.  Amazing things have happened over the past year on Methotrexate.  What if Plaquinil doesn’t control the disease and I move backwards?  I guess that’s why I’m doing this now; I’m still on medical leave, now is the time to discover how to be healthy long term.  Hoping that this medication is kind to me and that I can have success with it.  

So why did I sort of want to call this post “Winning?”  I has been a fun month!  Not only did I get the incredible news about my health, but I had a couple other mood boosters as well.  I took home my first win at VINGO night (Bingo at the local VFW) - which was just as great of feeling as I had always imagined... Haahaha!  Topping even that victory, the Holzingers finally took home the Golden Bean Trophy at the 4th Annual Chili Cook-Off (an event that we hold with our college pals).  

My little Pronto Puppy has been feeling great too!  His liver values have come down, considerably.  He was able to discontinue taking Prednisone and has been bouncing around the house like a pup again!  We are so excited to see him feeling better!  

So much to be thankful for this time of year and always!  I am so grateful for all the love and support from my wonderful family and friends!  A joyous holiday season to you all!

Will check in again around the New Year!

Much love, 

Maren

* ANA = Anti-nuclear antibody - which indicates an auto-immune disease is present in the body

Greetings from August!

Hi there, 

It's been a crazy couple of months!  I haven't been writing because I'm convinced that I'm fine and haven't wanted to return to the "sick" talk.  The word has actually been banned from my vocabulary - however I might have to use it a couple times here.  

So, I'm feeling great!  I was not however, ready to return to work full time though; so my position had to be released.  I'm okay with it; although there has been so much going on maybe I haven't let it sink in.  

Physical therapy continues to go well.  I'm not ready to hop on my bike yet, but I can do so much more than I could just a couple of months ago.  I can stand for extended periods and walk where I want to walk! I can be out and about for 5-6-7 hours without flaring up.  I got to see U2 in concert and danced in my spot the whole time (okay, that one landed me on the couch for the next day).

I have had a bit of heartache in July, although so much to be thankful for as well.  Anyone who knows me knows how much I love our dogs, Pronto and Rosie.  On the 4th Pronto got really ill.  He was diagnosed with an auto immune disease [just like his momma] called Chronic Active Hepatitis (CAH).  The doctors think that he ate something toxic as well which triggered the disease; so you can imagine our relief when Rosie's tests came back clear.  

His little liver is feeling better though with the help of Ursodial, Milk Thistle, Prednisone and Azathioprine - which it the same drug that I began my treatment with (except his tastes like chicken!)  We have been working with the amazing veterinarians at the University of Minnesota, where Pronto is a much loved patient.  We continue to pray for his health, and I make sure that I give him lots of the same love that he gave to me when I didn't feel good.  

Amidst all of the above, my grandmother passed away.  She became sick on July 11th and was gone the 17th.  We were lucky to have her here for 97 years and she was adored every minute of them.  I am beyond blessed to have had her in my life.  I had the pleasure of celebrating her life earlier this week with all of my family.  My heart is so full of happiness, love, and truly special memories.

As for me, just today I increased my Neurontin to 6 pills a day.  Previously, I was taking 4 at bedtime.  Now I will take 3 in the morning and 3 at bedtime.  I did feel a little sleepy this morning...but I might just still be a little tired from being out with my cousins on Monday night!

I head in for a check in with my rheumatologist tomorrow.  Per our last visit, she mentioned wanting me to stick with the Methotrexate (MTX) for at least a year before switching me to Plaquenil.  November marks one year of MTX, so I’m pretty pumped to think that I might be done giving myself the weekly injections (which oddly seem to be getting more difficult to give myself) in the near future.

As mentioned, I'm really working on living my life without a thought of the diseases that grace my medical records.  I'm completely sick of "being sick."  So I'm not anymore :-)    That’s it.  I couldn't be happier about it.  Having said that, I'm officially on vacation from the blog!  No news is good news!  

I’ll check in from time to time, but in between notes, think of me feeling great.  Still learning how to live with the little things here and there that make my life just a little bit different than it once was, but shifting the focus from a life that revolves around a disease to a disease that fits into my life.  Pronto’s working on this too, so I have a buddy :-)

Lots of love and thanks to you, 

M