Question for Starr. AS and RA

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/24/2008 9:01 PM (GMT -7)   
Hey Starr,
 
I noticed in your signature line that you have AS and RA.  How in the world did your rheumy know you had both?  Did you have the gene marker for AS and the positive RA factor?  Do you mind telling me how you were diagnosed?
 
My question is because I'm presenting both AS and RA symptoms.  I have the classic sacroiliitis, spine and neck (arthritis), foot and ankle pain associated with AS.  And I have deformation in my toes, widespread joint pain in the synovial joints, fatigue, that annoying cough and raspy voice that can be associated with RA. I've had the sacroiliitis and neck arthritis since 2005.  All these other symptoms started popping up this past April. 
 
Thing is, I am negative for both blood tests.  Just waiting on the results of a full body bone scan I had done last week.
 
I'm at my wits end with all the pain, stiffness and immobility. From my rib cage down to my hip joints, I feel like I'm fusing together into one solid block.  I walk like a duck!  It's ridiculous.  My neck is so bad I can hardly move my head around. 
 
Just wondering how it all came about for you and if you had any ideas or advice for me?  Thanks a bunch!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 8/26/2008 7:37 AM (GMT -7)   
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.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Back to Enbrel 5/08 (I've gone full circle!), also currently taking .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/26/2008 3:29 PM (GMT -7)   
S, thank you!
 
Your information was very helpful, and so detailed. It's great!
 
I'm the black sheep of my family in regards to AI diseases. I'm the ONLY one with AI issues. So having that family history to bank on is not an option for me.  The positive blood work crap drives me crazy.  All the things I need to be negative for, I come back positive.  All the things I need to be positive for, come back negative.  So like you, I can't rely on blood tests.  I clearly have inflammation going on in my joints.  You can see the swelling, feel the warmth and see the redness. Yet, my sed rate is always within normal values.  Even when my lupus is flaring, the sed rate is normal.  Frustrating as you know!
 
What's going to be difficult is determining if this is AS, RA or a combo of both.  I have symptoms for each disease. What sets me apart from having only an RA diagnosis is that my entire spine is affected now.  From what I've learned, RA doesn't affect the thoracic and lumbar regions. I also have a heck of a time in the mornings.  I can hardly straighten up, and it takes a couple hours to get the major stiffness and kinks out.  I do have all day pain and stiffness, but it's worse first thing in the morning and right before bed. 
 
I guess we'll see on Thursday if any progress on a diagnosis can be made. I did see my pcp yesterday and from his viewpoint, he thinks I definitely have something rheumatological going on. 
 
I think I'll print out your post!  Keep it handy!!  Thanks again Starr, I'll keep you posted!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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