UC & Enteropathic Arthritis vs AS???

I went to a rheumatologist this week and I am waiting on a definite diagnosis, but he gave me literature and is leaning toward ankylosing spondylitis. If this is the case, he said he would be making a suggestion to my GI for a medicine change.

I am currently on Colazal. Sulfasalazine is one of the possibilities I think, but sulphur containing foods don't always agree with me so I'm not sure how I would do with a sulpha drug. I think some of my other options may be methotrexate - I'm thinking I could maybe add it to what I'm taking) Otherwise, it's Remicade, Humira, Simponi. I don't know which one of the bunch is better for side effects. Embrel and Cmzia is also used, but I don't know about for UC too. Entyvio would probably be my choice if I had to go biologic, but I don't know if it is for UC only and not ankylising spondylitis. Also is am wondering about LDN as a possibility. I just want to make an informed decision if need be and any thoughts. Also any other tips for those that also suffer from AS would also be appreciated.

Post Edited (UCandMe) : 10/6/2014 3:34:21 PM (GMT-6)

What lead him to the conclusion you didn't have it and what biologic is safest?

Kazbern ..... Thank you :)I will check out the resources page for med info. I don't want to switch meds unless I have a definite diagnosis. Im just not sure what will make me feel confident the diagnosis is accurate.

Did you get tested for the HLA-B27 gene? I gues otherwise it's based on symptoms and inflamation shown on MRI. It's my understanding that degradation is not always detected or even occurs early in the disease. I really don't want to move to biological unless I have no other choice. Is the SI area the only location you have pain?

One more thing - I've had SI pain since my 20s. I've been in physical therapy for various back injuries and so I was pretty familiar with the main issue of a hypermobile pelvis. He was not sure, and sent me for MRIs of the SI joint (which showed nothing) and then I had a cortisone injection. He told me that one of two things would happen - I'd get one week of relief or three months of relief. One week would be from the lidocaine that goes into the joint with the cortisone. Three months would be from the cortisone treating suspected inflammation.

I got one week of relief (ah, it was so, so nice). That was pretty good evidence I didn't have inflammation there.

Later on I had an abdominal CT to look for active Crohn's and this is when we found out I had arthritic changes at L5/S1. He found that unremarkable.

I'm sorry to hear it Sally. One thing my rheumy & GI did was to put me on pred (60 mg) to get my "whole body flare" under control. It took me 3 months to wean off. Then my GI put me on entocort (I have ileitis) and sulfazine at the same time. Once I weaned off entocort my joint pain stayed away.

I've tried double dose Remicade and double dose Humira. It was like taking nothing at all.

Kazbern- I was actually on 60mg Prednisone for months with a taper. Felt amazing with zero joint pain. As soon as I was off within 4 days it was back like day one. I was on the steroids from Oct-July. Did a few tapers. Even ended up in the hospital for few days then back on Pred. It's crazy because my UC is quiet. The joint pain is worse than anything!

Would Embrel, Cimzia, or Simponi be an option? I also wonder if low dose prednisone would be a Possibility? My mom has RA and is on that along with methotrexate.

I used transdermal LDN. I think it's what got me out of a 3 year UC flare. I can't stay on the Metho and Pred combo. I have a bad kidney and had chronic infections. ThT combo worked but couldn't stay on.

Hang in there, UCandMe. Having a diagnosis is a good thing - now you can figure out how to get better.

Biological meds have been used for autoimmune disorders for many years now. They do come with risks, but those risks are small. Ultimately you will have to decide whether those small risks are enough for you to say no. The long term risk of you developing significant pain and/or handicaps from degenerative arthritis in your spine seems like an important thing to consider.

The plus side of using biologics for AS is that this will hopefully get your UC into remission too. That would be nice! To have relief from all of these issues!

From what I can tell reading this forum, many people successfully use biologics for years. I think they have to change every now and then if they develop antibodies after continued use, but there are new approaches all the time to address the immune system. You might want to post over at the rheumatoid arthritis forum to talk about these worries.

Back from the rheumy today, but left feeling confused. My MRI did show moderate inflammation on the right SI joint and mild on the left. I thought this was telling of AS, but he is calling it enteropathic arthritis because of my IBD. His med suggestions are to switch to Humira or Cimzia.

If anyone can help me with the differences between those two types of arthritis I appreciate it. I thought AS mostly effected the spine and other joints possibly. Enteropathic arthritis I thought followed your flares as far as symptoms. I am almost in a remission and I still have back and neck pain along with occasional hands and feet.

Do I need biologics? I go back to my GI in three weeks to discuss meds, but want to have a better grasp before my appointment. Any thoughts on the subject would be helpful :)

The HLA-B27 test is not in yet, but he said that would not make a difference because it could be positive or negative in either. I just want to be confident that a biologic is what I need. I want to know if the form of arthritis i have is degenerative or not. I just left confused because I thought the SI inflammation lead toward AS but then I get enteropathic instead.

Well, I'd be much more serious about biologics if I knew I had AS.

Enteropathic arthritis is THOUGHT to follow bowel flares, but you will find plenty of people on this forum who say that their joint pain is not simply linked to increased bowel symptoms. I would agree tho that joint pain comes with active bowel inflammation, and getting rid of bowel inflammation should relieve joint pain,. Not sure that is true if it is really AS.