Ankylosing Spondylitis

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Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 4/22/2010 12:23 PM (GMT -7)   
I’m new to the RA forum (usually over at the Crohn’s board), but I’ve been struggling toward an AS diagnosis and I wanted to see if anyone over here had any input. I’ve been having severe upper back pain and stiffness for around six months now. I’ve had an X-ray, MRI and a nuclear bone scan done, all of which came back completely normal. I understand that this condition is hard to diagnose in the early stages because it can take up to 10 years for it to show up in x-rays and other scans. I’ve gone through a few doctors before someone would finally run a test for HLA-B27. I will be getting the results back next week, but all signs seem to be pointing to AS (pain and stiffness that’s worse in the morning and with inactivity, relief with NSAIDs, extreme fatigue, accompaniment of Crohn’s disease and uveitis). I was hesitant to believe it because I always thought AS was only in the lower back and mine is dead on T-spine, but my doctor keeps telling me it can affect the whole spine.
 
Anyway, if this ends up being the case, I’d like to be prepared. I was wondering mainly about fusion. Is it inevitable? Have any of you had AS for a long time without any fusion? Is it irreversible? Any input you guys could give me would be really appreciated. I can’t say I’m looking forward to getting this blood work back, but having run out of answers, any diagnosis seems better than no diagnosis. I don’t want to spend the rest of my life getting cortisone injections and missing out on actual treatment.
 
Oh—and one more thing: did any of you get diagnosed in the early stages of the disease?

23 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Remicade, 50 mg 6-MP.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 4/25/2010 7:52 PM (GMT -7)   

Hi Sarah,

I have CD and AS  too.

Your Dr. is right it can affect any where along your spine.

My AS was caught early and the MTX keeps it in check - somewhat :-)   I find the Humira not as effective, but thats just me. I cant say that I have every heard that its irreversable.

My AS is maanageable so long as I stay active - walking and yoga help for me.

Good luck with your blood tests and find yourself a good Rheumy :-)

Let us know how you go.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/27/2010 6:02 AM (GMT -7)   
I just posted and it was almost identical to this.  I did not read this one first, sorry!  It sounds like we are going through the same thing, except mine is in my lower back. 

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 4/29/2010 7:59 AM (GMT -7)   
Well my lab work did not show anything except a whole lot of inflammation.  My rheumatologist keeps talking about playing around with my TNF meds again, but without a diagnosis, I'm pretty much just self-medicating.  He's running some more blood work, but I didn't check to see what he's testing for.  He also gave me yet another NSAID, but it's definitely not a long-term solution because of the Crohn's.  He prescribed Robaxin as well (if the NSAID doesn't work), but I don't see how that can be a long-term solution either.
 
SydneyJo, thanks for the response :-)  It's good to hear fusion isn't necessarily permanent.  I have tried walking daily, but unfortunately, the inflammation seems to be causing so much fatigue that that didn't last long.  Even though rest can make the pain worse, it seems I can't stay awake long enough to stay active.  I hope everything is good with you and thanks for the well-wishes.
 
ALgirl, I saw your other post.  I'm sorry you're in pain and I'm glad the injections are helping.  Do you know if there are any side effects comparable to oral steroids?  Good luck with everything!
 
 
23 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Remicade, 50 mg 6-MP.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/6/2010 1:51 PM (GMT -7)   
I've just come to the conclusion that my SI arthritis is AS. I've been a Crohn's patient for about 10 years, but yesterday my rheumatologist was the first to connect the dots for me and call my various "sports injuries" and "achy joints" AS. I've never had uveitis or any skin issues, and my CD is pretty mild - my main complaint for the last 5 years has been arthralgia and arthritis in my hands and knees.

It was an MRI of a hamstring tear that identified the degenerative arthritis in my SI joint - that got the rheumatologist's attention. The orthopedic dr who ordered the film never made the connection between my muscle injury and my IBD, but I've felt for a long time that the hamstring tear was due to SI dysfunction.

My GI has me on ASAs (pentasa & rowasa), and added sulfasalazine about 6 months ago. My dose isn't very high (1500 mg/day) but I think the rheumatologist will want to push it up to 3000/day if my liver & kidney function look good. Maybe that's an option for you, too, Sarah.

painsnbody
Regular Member


Date Joined Aug 2009
Total Posts : 30
   Posted 5/18/2010 2:21 PM (GMT -7)   
Possi - When you say you had tailbone pain do you mean like Coccydynia pain. Almost as if you fell on ice. its a wird feeling.  I'm trying to find out if people with AS develope tail bone/coccyx pain.
 
Please let me know.

painsnbody
Regular Member


Date Joined Aug 2009
Total Posts : 30
   Posted 6/2/2010 2:08 PM (GMT -7)   
I was given Sulfazilizan and that helped my tail bone pain. Doctors are saying I have a auto-immune issue. They said if I didn't the med wouldn't of worked.
 
 
Now Time will tell.! Good luck!
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