Sacroiliitis

[katertot]

Hi everyone,

Has anyone here been diagnosed with sacroiliitis? I have been having lower right back/buttock pain for a while. I saw a rheumatologist a couple weeks ago and they ordered x-rays of my SI joints. The results said "Bilateral mild subchondral sclerosis along the sacroiliac joints is suggestive of sacroiliitis. Further evaluation can be obtained with MRI. No evidence of erosions". I was tested for the ankylosing spondylitis gene marker and was negative. I am scheduled to have an MRI on 11/27.

I know NSAIDs are usually used, but I know they aren't supposed to be used in patients with IBD. Even though my Crohn's is very mild, my GI doesn't like me to use them. The rheumy mentioned possibly a biologic or methotrexate. The only meds I'm on for my Crohn's is azathioprine. If anyone else has sacroiliitis, how is yours treated?

Thanks for any input!

 

[my little penguin]

Tagging Maya142
Ds is on humira plus mtx for his JSpA plus crohns

 

[Maya142]

My daughters and husband all have AS. You can have AS or Spondyloarthritis without being HLA B27+. It sounds like you are progressing towards AS, though you may not have enough x-ray damage to have it yet. An MRI will tell you more - glad you are scheduled for one.

Typically NSAIDs are used but with IBD, they are not usually recommended. My younger daughter has both IBD and AS but her AS is so much worse that her GI and rheumatologist have allowed to her to be on an NSAID. It took us a while to find one that did not upset her stomach, but we did (she also needs to be on a PPI with her NSAID to protect her stomach).

If NSAIDs can't be used, the next step is biologics. Methotrexate does NOT usually work for sacroiliitis. It works well for peripheral joint arthritis (such as knee or hand involvement) but not for axial SpA (such as SI joint or spine involvement). So a biologic would be used next - usually Remicade or Humira since that would work for the Crohn's too.

It is very important to treat SpA/AS to prevent them from progressing. When my husband was diagnosed, 30 years ago, biologics did not exist. So he was only on NSAIDs and has had quite a lot of fusion - in parts of his lumbar, thoracic and cervical spine. His SI joints are also completely fused and he's had 5 hip replacements.

I say this not to scare you, but just to inform you that this is a disease that needs to be monitored and treated. Now the treatments are MUCH better (biologics), so rheumatologists are seeing less fusion and damage. Our goal is to prevent as much damage as possible for my daughters. Both do have SI joint damage and fusion and the younger one has hip damage too.

But biologics have been miraculous for both of them and they would be much worse off without them.

Good luck!

 

[eleanor_rigby]

Hi Maya142 sorry to hijack this thread but do you know what the options would be for someone with Crohn's who can't use NSAIDs or anti-TNFs?
Thanks

 

[katertot]

Hi Maya142,

Wow, thank you so much for all of that information! I'm sorry that you have so many family members that have to deal with that. I know you did not mean to scare me--I like to research things and be as knowledgeable as I can be, so I definitely appreciate all of the information. It is a little overwhelming to think that I could have something on top of Crohn's to deal with, but I'll get there when I get there. This forum has been such a valuable resource for me since my diagnosis last year.

Thanks again!

 

[Maya142]

Eleanor - Stelara would be one. There are some other IL 23 inhibitors in trials that have not yet been approved, that will probably work for both Crohn's and AS. Tofacitnib is in trials for Crohn's and AS and is approved for RA.

Cosentyx was recently approved for AS (IL 17 inhibitor) but does not work for Crohn's.

Sorry, there aren't a whole lot of good options .

 

[minniemouse]

Hi katertot!

As mentioned above, you can definitely be HLA-B27- and still have AS. In fact if you're seeing a rheum or a doc that says otherwise, I would suggest seeking a different one because you won't be finding any help from them probably and that's no good. I was diagnosed with Ankylosing Spondylitis (HLA-B27+, Crohn's Disease) very recently and so I'm getting on Humira soon but I'm in the meantime also on a strong NSAID. My stomach hasn't been so great on it I'll admit but its the only thing that has helped my terrible AS pain. I'm hoping once I get on Humira I can stop taking NSAIDs given how they affect the stomach (especially when you have an IBD!!).

So even though NSAIDs aren't supposed to be used in those with an IBD, I guess they can since I'm taking one that's pretty strong at that... but yes biologics are the main line of treatment! I think Humira is one of the biggest ones used for both Crohn's and AS, but I'm not sure if Enbrel is too. My rheum suggested it to me at first, but quickly switched because she didn't want me to inject once a week and instead liked that Humira was once every two weeks.

What is your MRI of on 11/27? Is it of the SI joints again?

 

[eleanor_rigby]

Thank you Maya142 that is extremely helpful info!!

 

[my little penguin]

Minniemouse ask about volteran gel in addition to humira
It's a NSAID but topical so it doesn't affect the gut
Ds uses it daily

 

[minniemouse]

Minniemouse ask about volteran gel in addition to humira
It's a NSAID but topical so it doesn't affect the gut
Ds uses it daily

Wow! Thank you so much I had no idea anything like that existed. That sounds amazing. I'll definitely be asking about it on Monday (my first loading dose)!!

 

[Maya142]

Enbrel does not work for Crohn's. Just for AS.

For Crohn's and AS the anti-TNFs are Remicade, Humira and Cimzia. Simponi is approved for UC and AS and is sometimes used off-label for Crohn's.

Stelara (IL-12 and 23) was just approved for Crohn's and is in trials for AS.

My daughter is also allowed an NSAID because her AS is much worse than her Crohn's. We have found an oral NSAID much, much more effective than Voltaren gel. However, Voltaren gel is a good option if it's bothering your stomach.

We had to try about 12 NSAIDs before we found one my daughter could tolerate. We figured out that she can tolerate Mobic best, but has to be on a PPI too or she gets gastritis. She does occasioanlly get gastritis and then we treat with Carafate. It's a trade off, and I don't like that she is on NSAIDs, but her AS is pretty severe and her Crohn's is mild.

A recent study just showed that an anti-TNF and a high dose NSAID combined lower the risk of progression by 60% in AS. 60%! That is pretty significant, and so my daughter will stay on an NSAID as long as her Crohn's allows it.

Celebrex is also a good option - it is better for the gut. We might switch my kiddo over to it soon. Relafen has worked well for us too.

Good luck - hope the Humira helps.

 

[katertot]

So I had my MRI on Sunday and my rheumatologist sent me a message last night saying that my MRI was normal and I do not have sacroiliitis. That is good news, obviously, but I am confused why my x-ray results were the way they were. Also this now means more investigating why I have been having pain...

 

[Lisa]

I was diagnosed a few years ago with sacroileitis, thankfully have only had the one major flare up...was so bad I could't even get out of bed without massive pain.....

I have nagging pain, never had an MRI done for it, just x-rays which showed it.

 

[Maya142]

Sclerosis by itself does not indicate sacroiliitis. That's why they suggested you have an MRI. The thing they're really looking for is erosions and in the MRI bone marrow edema, which is active inflammation.

When you see all those things with sclerosis, then the sclerosis is significant. But I think they also found in studies that some of the normal, healthy subjects had sclerosis too.

I would talk to your rheumatologist and ask him what the next step is.