Thursday, December 9, 2010

Maren Update September 9, 2010

Hope you all had a nice Labor Day weekend! 
I had my results appointment with my rheumatologist, Dr. Grandits on Tuesday and began treatment.   This is a lot of info – so if you’re interested dig in, if not – the first paragraph will probably do the trick for you! 
I’ll be taking an immune-suppressant called Azathioprine (also known as Imuran) twice a day indefinitely, depending on how it works for me and how I feel.  I should know if my body is rejecting it within 2 weeks, I could start to notice an improvement in 3-6 weeks, and we’ll know if it’s working in 12 weeks.  I’ll be back for a check-up in 6 weeks, to see if I am ready to begin physical therapy.  I will also be going in for blood work every 6 weeks indefinitely to monitor the disease.  I can assume that I will take this drug for at least 2 or 3 years; then we can reassess to see where the disease is at and possibly switch drugs, or take a breather.  I’ll need to have another MRI every couple of years, and maybe additional biopsies too.  I will continue to use the Triamcinolone on my hands when needed; and have 6 month follow ups with my dermatologist.
Azathioprine is an immune-suppressant drug that was created for transplant patients.  The drug slows down your white blood cells so they’re not fighting things as much in your body.  Some people notice that they are more prone to upper respiratory infections, and that they’re less resistant to colds etc.  There are the freaky risks of lymphoma, cancer and all that crap and I am just not worrying about that right now.  Remember that as of now, everything on the inside looks good (liver, lungs, etc.) and that is really good news.
Some things that I learned at my appointment:
•          I can still have flare ups where I feel like crap and my body hurts; there isn’t a way to tell of frequent, if at all that would occur. 
•          Dr. Grandits currently treats about 6 other patients with dermatomyositis (DM).  2 also have lupus, 2 just got out of the hospital, 1 with only the skin issues, and me.
•          I can still be an organ donor, and most likely donate blood (as long as I’m healthy)
•          I can most likely have a baby.  I am not advised to take my medication during pregnancy, so we will have to revisit when that time comes.  They say that you can take medication if the “benefit outweighs the risk.” Whatever the hell that’s supposed to mean; like I would ever want to hurt a baby; but if going off the drug will kill me, I guess we’ll just have to cross that bridge when we get there.  If I did decide to stop taking the medication, then I would need to 3 months before trying to conceive.   There are a few alternatives that I could take while pregnant, too.
•          Until I can start physical therapy, I am not to exercise at all; since all that does is irritate the muscles more – which make the white blood cells freak out and attack me.
Below I have a picture that shows that muscle groups that are affected by the disease.  To the right is what my muscle biopsy looked like; Brad and I got to see it.  My muscle slides looked a little more intense than the example shown here.  The little fibers were in varying shades of red and pink – bright red when they were infected/inflamed (edema) and some even had little streaks in them.  The fibers that were dead were a pale pink or white.  The while blood cells were swarming these two types of fibers.  Then there would be areas that were fine.  Weird.  Anyway, Dr. Grandits said that perhaps the disease is so focused in my tissue right now that it hasn’t fully entered my blood stream; which may explain why some of my tests have been inconsistent. 

So, that’s where we’re at!  I have included a few websites if you’re fascinated… personally I am ready for a break!  I did accomplish my personal goal of getting through this part before the big 30th birthday, so that feels good.  Now to just wait and see if this medication is the one!
Thank you for your support, positivity and prayers.  Knowing that I have so many wonderful people who care has really helped me (and Brad) get through the tough times. 
Lots of love,
Additional Information (aka some good sites):
Please feel free to pass this along to anyone that is interested.  Half the battle is explaining it!  ;-)

No comments:

Post a Comment