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Axial Arthritis?

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Posted 9/12/2012 11:30 PM (GMT 0)
Anyone have axial arthritis or axial spondyloarthritis?  This is inflammatory arthritis of the pelvis and spine, not unlike sacroilitis.  (Or, maybe they're even related; I don't remember.)  Some literature suggests it's the pre-stages of AS, but I'm HLA-B27 negative.

In my case, the peripheral arthritis (large joints) preceeded intestinal symptoms of UC, and I managed it for many years with sulfasalazine, but it doesn't do anything for the axial variety.  Neither does Imuran.  It's probably not AS, RA, or lupus since the bloodwork for all those was negative.

My intestinal symptoms are minimal, and scope this summer was pretty clear.  Things looked good.  However, my neck and spine are killing me. 

It looks like I'm going to bite the bullet and start Remicade, but I'd like to hear if anyone has had luck with that for the arthritis, especially the axial arthritis.  If you had a colectomy and it went away, I'd be interested in hearing that, too.

Posted 9/13/2012 12:33 AM (GMT 0)
Hi seconder. I have axial arthritis, am HLA-B27 negative, and am in remission from UC (2+ years). I was diagnosed with AS in 2010. I've tried Humira, which helped a little, LDN, which helped a little, antibiotic therapy, which also helped a little, and now I'm trying diet, which is helping a tremendous amount. It's basically a no starch diet, but it could also be considered "paleo." The goal is to heal the leaky gut by eliminating nightshade vegetables, grains, nuts, beans, seeds, dairy, eggs, NSAIDS, alcohol, coffee, and anything you might be sensitive to. It's not easy, but my arthritis is going away. I'm still working on eliminating coffee and alcohol, but if I can do it, I think I can eventually get out of the woods, so to speak.

Here's a link to Paleo Mom's Autoimmune Protocol, which are the basic guidelines that I'm following:

http://www.thepaleomom.com/2012/05/modifying-paleo-for-autoimmune.html

Good luck!
Posted 9/13/2012 3:57 AM (GMT 0)
I am HLA-B27 negative as well but I have Sacro and peripheral arthritis. I don't know if I will end up with AS or not but I have a daily battle with pain from the Sacro and PA. I have to be careful how I bend over, sit or walk. If I bend over, like doing a chore or whatnot, I have to lay down on the floor to work out these horrific "spasms" I get. I have to be careful how I sleep as well. If I get too restless, my neck AND back kills me. I did just that the other day and I am still paying the price.

I have not found anything that really helps it effectively. I've been on Remicade for a year now and I can honestly say it hasn't help me with the Sacro or PA.

I've even had the blood test for RA (which was negative) - (As well as Lupus, Sjogrens...almost any and all AI diseases), but my docs are leaning more toward the diagnosis of seronegative RA (they haven't made up there minds yet!). I am going in for an EMG for possible foot neuropathy now at the end of September.
Posted 9/13/2012 11:29 AM (GMT 0)
Thanks for the responses.  I'm a little bummed to hear that the Remicade hasn't done much.  I've read that Cimzia is better for the axial arthritis, but the GI and Rheum. think Remicade offers a two-birds-with-one-stone approach.

I'll check out the link, runcycle.  I've tried diet modification without much luck, but I'll give it a look again.  I'm mostly vegetarian, so paleo-type diets are kind of hard to follow.

Good luck with the EMG, Red.  I had one this summer (everything functioning normally), but I was not expecting what that test was all about.  My advice is to go in good humor and laugh as much as you can while it's going on.

I get what you mean about screwing things up by making the wrong move.  My back was stiff when I woke up yesterday, and then through a series of bloodwork misadventures in the morning, I ended up driving from one end of the county to the other and back.  Good grief, I was in loads of pain and just couldn't get any relief all day.  The car is one of the worst triggers.  Thankfully, my usual commute is only 20 minutes each way.

Funny, when I ride my bike -- which I do almost every day -- the pain goes completely away.  I only wish I could pedal all day.

Posted 9/13/2012 12:09 PM (GMT 0)
Thanks for "good luck" wish. :) I've had an EMG before about 6 years ago. I was just barely over the abnormal mark for my legs/feet and moderate for my arms and hands (this was due to two bulging discs in my neck that have since been resolved). But the pain in my feet has progressed to that "walking on glass feeling" and I have no sensation in my feet up to my ankle (my primary did the prick test). So whatever I have is progressing.

Btw, driving makes me stiff as well. When my Sacro flares up, it can be torture! So you're not alone. But you can still try the Remi and see if it helps YOU. I just didn't have luck with it with other things BUT it has made my Uc go into remission :)
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