Wednesday, December 23, 2009

Antisynthetase Syndrome

I'm still trying to understand my disease. I've been doing some research and thought I would share in case anyone is interested. Also thought I would post some pictures of some of the symptoms of the disease... later I'll post pictures of the side effects of the prednisone! Antisynthetase syndrome is a chronic autoimmune disease of unknown cause. It is a subgroup of the idiopathic (unknown cause) inflammatory muscle diseases and is characterized by myositis, mechanic's hands, interstitial lung disease, arthritis, and Raynaud's phenomenon. What causes antisynthetase syndrome? The cause of antisynthetase syndrome is unknown; however, the production of a group of autoantibodies (antibodies that attack normal cells instead of disease-causing agents) that recognize and attack certain enzymes in the body called 'aminoacyl-tRNA synthetases' appears to be linked to the cause of the syndrome. The amicoacyl-tRNA synthetases are a family of enzymes which play a vital role in protein synthesis in the body. The autoantibody more commonly associated with antisynthetase syndrome is anti-Jo-1. Their exact role in causation of antisynthetase syndrome is not yet known, but viruses have been implicated. The fact that the onset of symptoms of antisynthetase syndrome typically occur during winter provides indirect evidence that infectious agents may play a role. The severity and type of lung involvement typically determines the outcome of the disease. Picture of my fingers experience Raynaud's Phenomenon. This happens quite frequently throughout the day between my fingers and my toes. They turn white, to blue, back to red once they warm up. We figured out last winter that my dad experience's Raynaud's Phenomenon as well. A lot of people do, but they do not know exactly what it is. Some people do not turn all the way to blue, just their fingertips turn white. It's a quite interesting thing... especially when you live in Minnesota like me as it's usually cold! I'm learning to cope with it very well though and as long as I have mittens and heavy socks I'm usually pretty good! Picture of my swollen wrists and feet due to myositis fluid and prednisone fluid! I actually have really small wrists and feet. My finger size at the time of our wedding was 5.5. Now my wedding ring is sized to 7. The fluid retention is crazy.

Monday, December 21, 2009

Another day, another scheduled appointment

If you ever talk to anyone with an autoimmune disease they will all say the exact same thing... you have your good days and bad days. Today I woke up and it wasn't a good day. My body was sore and I can feel the fluid starting to build up in my joints again due to the high doses of prednisone. I was extremely tired, so my activity today consisted of sleeping the entire day. I did get a call from my rheumatologists office today. They are now sending me to get a CT scan of my stomach. This was at the request of the hematologist who I will see January 11. I'm glad the appointment isn't until after the new year. We're not sure yet if they will be taking a sampling of my bone marrow yet or not, but I didn't want to be waiting for the test results during the holidays. Although, waiting for the actual appointment isn't fun either! It's times like these I have to remind myself that it could be so much worse and patience is a virtue. Chris and I are always telling each other that God only gives you what you can handle. I know we will be stronger from this and that I'm fortunate enough to have the support system that I do. But I'd be lying if I said I wasn't scared. My husband is being so strong and says he's not worried, but I can tell in his eyes that this past year is starting to weigh on him. I'm hoping we get some relief over the holidays to enjoy each other and our families. For me this year, it's hard to get into the Christmas spirit. I'm hoping that in a few days, and with some possible snow showers, I'll start to get excited. I can tell the prednisone is having an affect on my mood. Although the joy of seeing my two beautiful nieces in a week is what gets me through the day sometimes. It is hard for me to travel now, but it is all so worth it. The joy of seeing Christmas through a Child's eyes is going to be a special gift. I really wish Chris and I lived closer to them. I'm hoping in the next 5 years that will occur. Wishful thinking. I thought I'd post some pictures of the two "Georgia Peaches" known as Keegan and Mia! They're just precious and my brother and sister-in-law, Kelly, couldn't be doing a better job with them!

A video talking about Myositis

Saturday, December 19, 2009

Her Diamonds

I just found out that Rob Thomas' wife has battled an autoimmune disease for the past few years. His song, "Her Diamonds" is about her battle with it. Wow, it really hits home. I decided to post the lyrics... it's as if my own husband wrote this. Oh what the hell she says I just can't win for losing And she lays back down Man there's so many times I don't know what I'm doin Like I don't know now By the light of the moon She rubs her eyes Says it's funny how the night Can make you blind I can just imagine And I don't know what I'm supposed to do But if she feels bad then i do too So I let her be And she says oooh I can't take no more Her tears like diamonds on the floor And her diamonds bring me down Cuz I can't help her now She's down in it She tried her best and now she can't win it Hard to see them on the ground Her diamonds falling down She sits down and stares into the distance And it takes all night And i know i could break her concentration But it don't feel right By the light of the moon She rubs her eyes Sits down on the bed and starts to cry And there's something less about her And I don't know what I'm supposed to do So I sit down and I cry too But don't let her see And she says oooh I can't take no more Her tears like diamonds on the floor And her diamonds bring me down Cuz I can't help her now She's down in it She tried her best and now she can't win it Hard to see them on the ground Her diamonds falling down She shuts out the night Tries to close her eyes If she can find daylight She'll be alright She'll be alright Just not tonight And she says oooh I can't take no more Her tears like diamonds on the floor And her diamonds bring me down Cuz I can't help her now She's down in it She tried her best and now she can't win it Hard to see them on the ground Her diamonds falling down And she says oooh I can't take no more Her tears like diamonds on the floor And her diamonds bring me down Cuz I can't help her now She's down in it She tried her best and now she can't win it Hard to see them on the ground Her diamonds falling down

The past year...

June 28, 2008 will go down in history as one of the best days of my life. It was the day I married my best friend and the most amazing man in the world. All of the hard planning and details fell into place. For a June wedding, we couldn't of asked for more perfect weather. 80 degrees and sunny. I can honestly say that we had the perfect wedding... On June 30, 2008, Chris and I ventured out for our honeymoon. We drove the 6 hours to WI, where we started a glorious honeymoon in the middle of no where. It was perfect- secluded and romantic. Just what we needed after the hecticness. July 1, 2008, was the day I woke up with my first fever... I had been having a lot of knee and shin pain for the past few weeks, but I chalked it up to shin splints since I had been working out. Needless to say, although our honeymoon was relaxing and enjoyable, I didn't feel well the entire time. I figured... hey it's probably exhaustion from the wedding. Chris and I came home, and after two weeks I was still having fevers and such, I decided to go to a walk-in clinic. They took a chest x-ray due to the coughing I had been having and told me that it looked like I had bronchitis. Gave me a perscription and sent me on my way. I figured, alright, great... I'll get the antibiodic in my system and be on my way to getting better and won't have to deal with doctors for awhile. Needless to say, this is where the journey really started to get interesting. After a week on the antibiodic, I was still having fevers, coughing, and then one Saturday I wake up to my legs swollen. Imagine seeing no definition from your knees down to your feet. Fairly scared, my husband took me back to the same walk-in clinic that we went to before. He pretty much said, well it's definately not bronchitis. Now started the tests... For the next three weeks I was in and out of the primary care doctor's office... I think I was tested for everything you could imagine. I believe that I was tested for lymes disease a total of 6 times... they were certain that was what was going on. Until one day, I came in and told the doctor how my fingers turned blue at work. He looked straight at me and said I'm sending you to a rheumatologist. I looked at him and said a rheuma a who? This is where life changed for me and my husband. At 23 years old, I was very niaeve to think that anything could seriously be wrong. September 1, 2008 reality began to set in. My blood work came back stating that I was anti-jo 1 positive. Dr. Fontana, the rheumatologist, stated that I had an autoimmune disease called antisynthetase syndrome. The disease consisted of five symptoms: interestial lung disease, raynauds phenomenon, arthritis, mechanics hands, and polymyositis/dermatoymyositis. I had all of the symptoms except the mechanics hands. She explained to me that the disease was chronic, but we could control it. The doctor was very straight forward with the realization that I would have to change some things in my life but she gave me optimism that once we controlled my disease I would be able to live a normal life, but I would be on medication for the rest of my life. With that, although in shock, I was then sent to the pharmacy where I started 40 mg. of prednisone and an immunesuppressant called CellCept. This started the year of medication. From CellCept to tacrolimus, up and down on prednisone, my life seemed consumed by visiting the pharmacy and going to the doctor. From Thanksgiving to May I averaged a temperature of 100-101 degrees. Needless to say by February I was no longer able to work. This was one of the hardest decisions I had to make. Although I knew I couldn't physically work, I still felt like I was letting down my work place and my husband. It was a hard decision to come to terms with, but the best one I made. I began to taper prednisone in May. By July I was down to 7.5 mg. of prednisone. But I felt terrible. I could barely walk every morning. My wonderful husband had to practically carry me to the bathroom before he left for work. Many days I woke up feeling like this was never going to end. I pretty much slept the entire day. I am fortunate to have an amazing cat that kept me company during these lonely times of only being able to lay in bed and watch tv. I've definately become an expert in TV shows... who knew there were so many reality shows out there. In August I went to my doctor and she told me that my disease numbers were back up. Pretty much none of the medicine was working. She talked with a doctor from Mayo Clinic who recommended adding the drug Rituxin. I said great, sign me up... well it wasn't that easy. First, I had to get a bronchoscopy, as my pulmonologist was concerned about a lung infection. Although the procedure sounded scary i.e. tube down your throat to flush out your lungs, in the scheme of things it wasn't all too bad. The hospital was great and we were out of there by lunch time, where I went home and slept. It came back that I had a lung infection so I wasn't allowed to start the rituxin for a couple of weeks, in that time I had to get approved by a foundation to pay for the drug. The drug would be administered in two 6 hour IV's and each one cost $20,000... yes I said $20,000. it's hard to believe that a little pouch of liquid could cost that much but it did. In the end we got approved and started the IV treatment at the beginning of October. The process was pretty harmless and I was fortunate that Chris was able to be by my side, as it was quite boring. The first infustion went well, but the after effects were terrible. The lung infection, which we thought had cleared, hadn't so fevers and muscle pain started up again. They prescribed an antibiodic, of which I then had an allergic reaction to. With a 103' fever and in the middle of the H1N1 scare, we didn't know what to think. Luckily, at this point I'm becoming really good at reading my body and eliminating what I think is either my disease or an infection. I got a new drug that by the next day I felt 20 times better. The next week I was not having any fevers and was able to get the second infusion. This one went by with flying colors. It's now December and I just went to my doctor's appointment. I'd been having on and off fevers and my dermatoymyositis was still active- this is noticed by the red rashes that are present on my eyelids. So she continued me on 60 mg. of prednisone and added another immunesuppressant drug. I'm an "intersting" case in the medical field and puzzle her quite a bit. My muscle enzyme is down, but my white blood count is up to 31. Not what you want to hear before the holidays. So now it's off to another specialist, this time a hematologist. With my muscle disease, there is links between that and cancer, so she wants me to see a specialist to see if I need to get my bone marrow tested. Although scary, I've lots of these types of tests and conversations before, so I have the mentality to not be alarmed until necessary. I could probably post a novel regarding the past year, but my thoughts are to keep moving forward. I know God only give you what you can handle and I have been fortunate to have the most amazing husband by my side this entire time. I know someday I will look back on this experience I realize how it has made me a better person and a stronger. I'm anxious for this Christmas season, as last year, Chris and I were not able to celebrate the season to the fullest. At least this year, I am not having constant fevers and due to the high amounts of medication (averaging only 26 pills a day), I am more comfortable. I'm looking forward to relaxing with the ones of love. Which I think I will do right now, as my husband just walked in the door with dinner. Bye for now.
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