Thursday, May 5, 2011

Your body attacks your joints? What?

I have a demon that I deal with on a daily basis.  Sometimes this demon interrupts my life, sometimes it doesn't do anything.  It can stop my hands from working, or my hips from allowing me to walk.  The demon is more commonly known as Rheumatoid Arthritis (RA).  I was diagnosed in February 2010.  My doctors believe I may have been dealing with RA for much longer.

When I young, about the age for puberty to kick in, I had pain in my knees all the time.  In middle school and high school pain developed in my wrists.  My doctor at the time assumed I strained them too much causing tendinitis.  When started I living with my first roommate Niki I started have issues with my shoulders and minor issues with my hands.  I started becoming more and more fatigued.  This became confused with depression, which I wasn't dealing with at the time.

After discussing everything that was happening with me starting in summer of 2009 with my coworker Marnie she mentioned how it sounded like RA.  I went to a doctor in November 2009.  At this point my hands, hips, shoulder, and wrists were painful, swollen at times, and achy.  The doctor said it did sound like RA.  This doctor was in Kent, WA and I had informed him that I was going to move to Seattle so if I was seeing a specialist I wanted to see one there.  He ended up referring me to Covington, WA.  So I went some time without seeing a specialist. 

In February 2010, I went to the Seattle Rheumatology Associates after seeing Dr. Morrison at Swedish Queen Anne.  They're great.  I met Lynn, my nurse practioner, and Dr. Mease my rheumatologist.  My blood work came back with very normal markers.  However, I was symptomatic, along with a family history of assorted autoimmune diseases.  Dr. Mease diagnosed me with servo-negative RA.  Which is a fancy way to say that they can't track my disease through my blood work, because the standard markers that would indicate RA are normal.  RA is an autoimmune disease that works on your immune system.  For some unknown reason my immune system thinks my joints are foreign.  Like the body does when a person receives a transplant.  Therefore it attacks my joints causing pain, swelling, redness, and over time damage.

We started down the road of medications, side effects, and frustration.  In the summer of 2010 I started Humira.  This worked great, except I started getting infections which I hadn't ever had a problem with before.  Humira is classified as a biologic drug that attacks the cells that can build up along with inflammation cells.  Needlesstosay, biologic medications are all injection type medication and increase the risk of infection. 

In November 2010, I stopped taking the Humira.  I called Lynn and she understood that I was feeling 100% better and I didn't want to be on a medication if I didn't need to.  She said that I could stop the Humira if I wanted to but to schedule an exam.  My last flare up for a two month period was November 15ish.  During those two months I felt amazing.  I wasn't fatigued, I didn't hurt, it was great but I was waiting for the other shoe to drop.  It dropped in February, I was worse than I was when I was initially diagnosed.  We upped my Tramdol and Pred, added Celebrex and switched over to Enbrel.

I was excited for Enbrel because many of the people I knew who were on biologics were on Enbrel.  A month passed and I wasn't getting any results except for nasty injection site reactions.  I went to the emergency room over the last one because it made my left thigh swell up, inflame, red, painful, etc.  I was worried and scared.

We stopped the Enbrel and I went in for an appointment mid April to see what else we could do.  Of course, the next step in medication was either an actual injection or an infusion.  With RA and many other autoimmune diseases you have to start with NSAIDS, then progress to DMARDS, have to take Methotrexate (lose dose chemo) before you can try any biologics.  Humira and Enbrel had come in a handy-dandy pen with a button.  This way I didn't see the needle going into my skin.  I was terrified to do injections. I had blood work done and radiographs which came back looking beautiful, which I guess is good.

After talking with Lynn and discussing the concern she said I could come in and have the nurses give me the injection.  Which I was much happier with.  So, I scheduled an appointment for May 3rd to start my new medication called Cimzia.

I went into my appointment with Lori, the nurse, extremely nervous.  I'm usually fine with other people poking me with needles.  I enjoy donating blood, etc.  But between the time I had my appointment with Lynn and my Cimzia appointment with Lori I decided I should be able to do this.  I had many people who were supportive of my ability to do my injections myself.

The version of Cimzia I am on is in a preHumira and Enbrel did.  Which was immensely relieving to me.

Cimzia starts off with a loading dose: inject two syringes at week 0 then two at week 2 and two at week 4.  These are given the same day within minutes of each other.  So, I had another injection to do.  Since I can give it in my thigh or my stomach, two finger tips away from the navel I decided to try my stomach for the second one.  First off it's an awkward angle for my hands.  Secondly, my tummy was sore afterwards.  So, I decided to stay with my thighs.

Lately, I have been flaring up terribly, pain ranging from a 7 to a 9 on a scale of one to ten, one being nothing and 10 being unbearable.  Swelling has been bad too.  The worst part is I have lost quite a bit of strength in my hands and often can't open things.  My hips like to seize up as well making it difficult to walk.

I don't want to deal with RA, but I don't exactly have a choice.  I will be posting information here and there about the disease and how people can understand it or help others.  The absolutely most difficult thing about autoimmune diseases is often you do not look sick therefore a lot of people don't think you are or they don't understand.  I do get glared at when I take the elevator even though I'm 24 and look healthy.

My posts about RA are with hope that I will help others understand autoimmune diseases and that you cannot assume anything about anyone.  Just because I take the elevator doesn't mean I am lazy, it means my knees or hips are in too much pain to go up or down the stairs.  I have chosen it to be an endeavor to enlighten and help others grasp this. 

On May 21st, 2011 I am walking with a dear friend Olivia, she is in a very similar situation however she has Stills disease as well.  She inspires me with her up beat attitude and presence.  This walk is put together to raise awareness, and money for research. 

Here is the link if you would like to check it out: I am a part of Team Oly.

I also am in two research programs through Dr. Mease's office.  One is anonymous and tracks how I am doing with my disease through a survey every couple months.  The other one is not anonymous.  I filled out a huge survey and donate blood to the research of the complexities of RA.  They are testing for variances in the people with RA and why some medications work perfect while others don't.  I will help in any way I can so that some day we will have a better understanding of autoimmune diseases.  I know my time, blood, energy, surveys may help someone in the future.  That's what I give to the world in light of a negative situation.  That makes me happy and feel good.

Greet the world with a smile.
Always look for the good because it will keep you strong.

Always Remember:
"Be kind, for everyone you meet is fighting a hard battle" - Plato 

1 comment:

  1. Amanda, I am sorry to read you have RA and even though you are not alone in this, I know this is little consolation. It does help being able to share, talk and exchange hints and tips, or just to complain to someone who understands what you are going through, because most people don't. If I can be of help, just let me know.:-)

    I'll be following your blog on a regular basis and hope God blesses you abundantly.

    God's Grace.