Thursday, December 9, 2010

Maren Update, December 1, 2010

12.1.2010 - 12 Week Treatment Update

Hello friends,

In hindsight, the past 12 weeks went by pretty fast; but it didn’t always feel that way.  As you may have guessed, Azathioprine was not the drug for me.  In fact, it seemed to make me much more ill over the course of the trial.  Brad and I met with my Rheumatologist, Dr. Grandits yesterday to discuss my options.

To my dismay, Dr. Grandits suggested, although previously omitted, that my Dermatomyositis (DM) appears to be partnered with either Lupus (SLE) or Fibromyalgia (FMS).  DM is responsible for the “exhausted” feeling that I experience in my muscles.  The achiness and pain however, would most likely be associated with another connective tissue disease such as the previously mentioned, which are common pairings for patients with DM. I do have severe pain and tenderness in all FMS correlated areas on my body.  I have felt like I have been losing hair (a sign of SLE) but also recognize that my hair is about 3 times as long as it has been in the past 20 years.

A diagnosis for Lupus of Fibromyalgia will be the result of a process of elimination as we continue to experiment with treatment options for my DM.    To me FMS seems to be the culprit, but apparently Lupus likes to masquerade as Fibromyalgia, so who knows.

I had blood work done on 11/25, my white blood cell count was low – but that is to be expected when taking an immune suppressant.  My other blood work continues to appear normal, as it mostly did all along; so we need to rely on my biopsies and MRI’s for any signs of progress.  I will be going in for another MRI in the next couple of weeks to see if the muscular 
inflammation is improving at all.

We will continue to do MRI’s at intervals to track progress.  Once my muscles begin to show a reduction in edema, I will start physical therapy.  I will do my PT at Sister Kenny Center, and then Brad will help me follow a daily plan at home.
My new DM medication is called Methotrexate (MTX).  

MTX is a chemotherapy drug, but used in lower doses it can be very effective in treating diseases like DM.  This medication is taken either by 10 pills or one injection at a time, one day a week (to reduce side effects).  I will start with the pill form; after 3 weeks if I am [still] feeling too nauseous, I’ll switch to the injection - which I can do myself.  This medication could make me feel exhausted or nauseous for up to 24 hours after taking, so Brad and I decided that we’d take it on Sunday mornings. 

Thankfully, the MTX doesn’t take 12 weeks to show whether it’s working or not.  I should know within 6 weeks if it’s the one for me!  To offset some of the side effects of MTX, I will be taking a large dose of Folic Acid as well.

My 3rd new drug is called Trazadone, which serves two purposes.  First, ever since I have been sick, I haven’t been able to sleep which is making me even more tired, achy, exhausted and emotional.  Trazadone is an effective, and non-habit forming sleep-aid.  The second reason for taking Trazadone – it has been shown to alleviate the symptoms of Fibromyalgia, one of which happens to be difficulty sleeping.  I am really looking forward to sleeping through the night again; I can only imagine how much that could help me.

Dr. Grandits mentioned that I seem to be a candidate for Plaquenil as a long-term treatment drug; once the disease has been managed by the more aggressive medications that I am using now.  This was good news for us, since Plaquenil is a more gentle drug on your body; you can also safely have a baby when taking it.  For now, babies are out of the question, as MTX has been put in “Pregnancy Category X” by the FDA.

I am still on the waiting list to see a Specialist at the Mayo Clinic.  For now, I continue to rest; I have a check-up in 3 weeks.  I have been pretty emotional in the past month or so, from feeling fine with everything to depressed.  I think that the Azathioprine wore me down too far and that really got to me.  Now, I’m more at the point where I don’t really care what else they tell me I have; just fix it.  

I have been off of the Azathioprine for just over 24 hours, and I’m already feeling hungry again.  I’m in a lot of pain today, but I will continue to take Ibuprofen and Tramadol (non-narcotic pain killer) until [hopefully] I don’t need it anymore.  I start the Trazadone & Folic Acid tonight; the MTX on Sunday. 

In case you have had any doubt, Brad has been beyond wonderful as always.  God really picked a good one for me.  My true partner in life; we’re going to get through this together – daydreaming about that healthy time keeps me positive and optimistic. My little Pronto and Rosie make me laugh and smile every day, and keep me company on the couch.

I hope that all of your holidays are off to a great start!  As always, thank you for being so supportive.  I have really been lifted up by all of the positivity and love that is surrounding me every day, so thank you for that.

Lots of love,

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