Does anyone have spondyloarthritis?: Please help, I... - NRAS

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Does anyone have spondyloarthritis?

EllaRuby profile image
EllaRuby

Please help, I have Crohn’s Disease and a 15+ history of lower back pain improved with movement. I recently saw a Rheumatologist and I had a Mri of SI joints and full spine my results were:

There is partial lumbarization of the S1 with enlarged left transverse process which shows Pseudoarthrosis with the main sacral body (Castellvi classification Type IIA)

Otherwise lumbar vertebral bodies show normal height and signal intensity. There is small lipomatous area noted within the L4. No evidence of any enthesitis.

Mild left lateral L2-L3, L3-L4 disc protrusion slightly contacting the L2 and L3 nerve roots in the extraforaminal regions. No significant compression. Normal appearances of the facet joints. Spinal canal diameter is capacious.

The Rheumatologist said, no evidence of spondyloarthritis, do you guys agree?

Many thanks in advance

10 Replies
Hidden profile image
Hidden

Hello.

Yes I do. I have psoriatic arthritis that has damaged spine and sacroiliac joint. I have disc damage too.

EllaRuby profile image
EllaRuby in reply to Hidden

Thank you for getting back to me. Did you have evidence on an MRI?

Hello,

I have RA and also have ankylosing spondyloarthritis. Am now back Simponi (had remission for about a year, but dammit, that's life.) Simponi is approved for both conditions. Did my first subcutaneous injection two weeks ago. Starting to feel better.

Feel free to ask me any questions, I wish the best for you!

EllaRuby profile image
EllaRuby in reply to Eve673

Thank you for getting back to me. Did you have evidence on an MRI? She gave me the impression before the scan this is what I had based on symptoms and my medical history. Also, I have previously had Humira for Crohns Disease and this improved all my symptoms so much! She mentioned Cimzia at the first app but after the scan she said, there is no reason for your back pain!

Eve673 profile image
Eve673 in reply to EllaRuby

Hi,

Short answer - not yet.

Long answer:

I will have my lumbar/sacral MRI from a few months ago compared to the last which was done in 2014. Have an appointment with my rheumatologist mid November. At this appointment I will push for a dual comparison and very detailed observations. And this will be done.

My diagnosis is from symtoms, having RA, fibromyalgia etc for over ten years. My mother has polymyalgia rheumatica, so there is a genetic component to factor in.

I've had sacroiliac pain bilaterally, but more so on the left, since 2002.

At any rate, there's no "cure" for this. Simponi is recommended, along with strengthening and stretching exercises.

Personally, I want a definitive scientific report. It won't change course of action, however it may change my mindset.

None of us are medically qualified, so no one is going to be able to give you a reliable and definitive answer, nor would it be appropriate to do so. That said, my understanding of the report you’ve posted is that it demonstrates functional spinal issues, namely disc related problems, along with a congenital abnormality of the lumbosacral vertebra: the Castellvi scale is used to categorise lumbosacral transitional vertebrae or LTSV, which is a condition you’re born with that would potentially explain your lower back pain issues. MRI evidence of arthritis in the SI and lumbar region, particularly with a prolonged, untreated history spanning several years - other than obvious erosions - is a finding of subchondral fat and/or fat metaplasia, where inappropriate fatty deposits are found around the bones and joints. It turns out my lower back was my first arthritic flare 20 years ago, aged 16, but I only finally got diagnosed at the start of this year.

EllaRuby profile image
EllaRuby in reply to Charlie_G

Oh wow, that is a long time, I’m sorry to hear that. Thank you for getting back to me and your detailed response, it’s very helpful. I hope you are finally being treated and that things have improved.

I have AS - you have to have inflammation or fusion in the SI joints for diagnosis. Your report doesn't mention this so I suspect why you've not been given a spondy diagnosis. How old are you? I believe if under 25 you should be kept under observation as it may be too early to tell. Also any other family members with it? My sister showed no signs in MRI at 40 but was still kept under rheumatology because of my diagnosis.

Thank you for getting back to me, I’m 38. No other family members with it but have an uncle with psoriatic arthritis, I have Crohns Disease, psoriasis on my scalp and my back/joint symptoms improved in the years I was taking Humira. She gave me the impression I had this at my first app, after my scan she said, there’s no reason for your back pain!

My diagnosis is axial spondyloarthritis. It does not show up on scans but my rheumatologist made the diagnosis on the basis of my description, pain levels and slightly raised ESR. It was confirmed when the biologic he gave me worked like magic and took all the back pain away. Unfortunately, the biologic stopped working after 4 months and am now trying different drugs. Had had that back pain for years and it deteriorated to the point that I could only stand up for very short periods.

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