Question for Starr. AS and RA

Hi Ginny, wow, where do I start!

It's been a long fought battle to get my AS diagnosed. I've had symptoms since I was in my early 20's -- it took 20 years for a diagnosis. I was in the Army when I first started having problems and of course, if you complain that you're not well, you get labeled as a malingerer. I kept my mouth shut until I got out. I am positive for HLA-B27 (thanks Dad), however, xrays of my SI joints confirmed it. I have advanced sacroiliitis - my SI joints are almost completely fused; I also have it in my neck and heels. I am the only one of my siblings to have this.

Getting diagnosed with AS was considerably harder than the RA diagnosis - women don't tend to fuse as fast as men, therefore we don't show the damage until many years later. At the time of my RA diagnosis, I complained about my hips hurting and my inability to get moving in the morning (we thought it was my hips anyway). I had xrays done at that time -- unremarkable. Flash forward to 4 years ago and the damage was advanced by that time.

One thing to keep in mind -- you can have AS without being positive for the B27 marker; because of that, my rheumy looked at the "big" picture, just in case. I had to present him with a full family history (tough when parents/grandparents are deceased and you can't ask questions), all of the symptoms that I had (iritis, costochrondritis, severe pain in my pelvic area and lower back, inability to get moving in the morning -- took about 40 minutes to an hour to get upright, etc.), what my lifestyle has been like over the past few years, etc. The first words out of his mouth after reading my profile and looking at me were "does anyone in your family have AS?" I commented that I thought my Dad did (after thinking back on how he stood, walked, etc). After many blood tests and many xrays, he confirmed the AS diagnosis. What a relief after all those years, but like I mentioned, the damage was already done.

As for the RA -- I was diagnosed with this rather quickly at the time (about 17 years ago). At first they thought I had Lupus - I'm borderline. I kept complaining that my hands hurt and my mother-in-law (bless her) convinced me to push to see a rheumatologist. She has a few forms of arthritis (really bad) and felt that I was at the onset. She was correct. I'm seronegative for the RA factor, but again, you can see in my xrays the damage. It has really gotten worse in the past year. I have it primarily in my hands, but it seems to be traveling around now. Very common I hear. Again, I'm the only one in my immediate family to have this.

My suggestion would be to really push your rheumy to take you seriously. He/she must listen to you and what is going on with your body. If he/she doesn't, find one who will listen. Blood tests are NOT my friend, so we put little stock in them. Even in my worst flares (I could barely walk and stand upright), my sed rates and CSR (?) rates were normal - still are to this day, so my rheumy and I go by how I feel and xrays. I get new "pics" every year to monitor damage.

By getting on preventative medicines now, you may be able to ward off more serious damage and have a chance to be as normal (whatever you consider normal anyway) a life as possible. My rheumy started me immediately on Enbrel and Methotrexate. That was 4 years ago (5 in January). What a difference it made in my life at that time -- even to this day. I've been on Enbrel, Remicade and Humira. I'm back to the Enbrel -- well, I'm on hiatus right now since I'm currently unemployed and the cost is too much. When I'm back to work and insured again, I'm going to convince him to let me try the Remicade again. Best thing that ever worked consistently for me (had a bad reaction -- don't know why, last November). Load me up with the pre-meds and infuse away! The Enbrel works for a time, but loses its efficacy, Humira did nothing. We are all different though, so take this with the grain of salt that it needs.

Whew...this is a long one! I hope this helps some. Have you been to the Spondylitis website -- www.spondylitis.org? If not, I would suggest you take a look - great info, especially to take to your doctor. If you have more questions, let me know. I'll try to answer as best as I can, given my experience.

Be well and keep me posted on your scan.

~S.