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Questions for those of you with ankylosing spondylitis

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Posted 4/27/2010 12:58 PM (GMT 0)

Hi.  I have never posted on the RA board but I have on the Crohn's disease one.  I have a new diagnosis of sacroiliitis and now possibly AS and one of the moderators over there suggested I come here with questions on these things.

I just saw my orthopedic dr again today and got a steroid injection into my left SI joint for sacroiliitis (GI dr thinks due to Crohn's).  I had the right one injected 1 week ago and it has helped a lot!  Today the dr mentioned that he was afraid I might be in early stages of AS and that if these injections did not work well or for very long he wants to get an MRI done.  Any advice from those of you that have this condition would be greatly appreciated!  It seems like every time I go to the dr they mention some new disease/diagnosis!!! 

Posted 4/28/2010 3:44 AM (GMT 0)
I have Crohn's and ankylosing spondylitis. My Crohn's went into remission when I was on Remicade. The Remicade helped the AS for 2 1/2 years and then it stopped working. Went to Humira but unfortunately developed drug induced lupus after only 2.5 months. Was off all anti-TNF meds for a year and the AS got progressively worse. Then I went on Simponi last June and finally once again have a better quality of life like when I was on Remicade.

I have lots of inflammatory problems in my SI joints. I have had them injected several times during the last four years. I cannot sit down when the SIs are flaring. The pain is simply too much. I also used to get lots of inflammation in the tendons where they insert into the bone. This is called enthesitis and is common in AS. The anti-TNF meds really help relieve this problem. The only other relief I have gotten from the enthesitis is from steroid injections or taking oral steroids.

If you have decent insurance and can afford the MRI, go for it! The MRI can help confirm or negate an AS diagnosis. Damage from AS to the SI joints takes a while to show up on x-ray. It can be seen much earlier on the MRI.
Posted 4/28/2010 12:55 PM (GMT 0)
Thank you so much for your response.  I am the same way, I cannot stand to sit.  Last night every time I tried I would get sharp stabbing pain so I ended up lying in the floor in order to watch TV with the family!  Is Remicade ok with lupus?  I am supposed to get testing done because of some symptoms I had during a bad Crohn's flare in the hospital and enlarged spleen.  I just noticed you had this diagnosis too.
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