Romanus Lesions

[floating_]

Hi everyone!

I hope this is an OK place to ask some questions.

So I recently was told by my neurologist that I had Romanus Lesions on my spinal vertebrae and I've since found out that they're associated with Ankylosing Spondylitis. What are they exactly and should I tell my GP what was found? Are they a cause for concern? I am HLAB27 negative though.

I am on long term prednisolone and found that my back pain got better when I was at higher doses, and generally my back pain improves when I'm moving and is considerably worse when I wake in the night (usually the reason I wake in the night!).

Has anyone else had these lesions? What do they mean? Thanks!

[AgedCrone]

I would have thought your neurologist would have informed your GP of that diagnosis.

Maybe you should arrange a consultation to discuss things?

[floating_ in reply to AgedCrone]

All my neurologist told me was that the Romanus lesions are "probably" due to my Osteoporosis in my spine. I just found on Google that they're associated with Ankylosing Spondylitis. Should've made that clear in my OP, sorry! I definitely haven't been told I have AS. Just the lesions. It just struck me as weird when I was reading about the symptoms of AS as they resonate with me a lot, but I do have a complex medical history including Ehlers-Danlos Syndrome which might complicate the picture.

I will be speaking to my GP about a referral back to general rheumatology or if I should go through my tertiary care rheumatology specialist about it (although I don't see them again until August next year). Just wondered if anyone knew anything about the lesions at all.

Sorry if this is the wrong place to ask questions, just don't want to waste my GPs time if it's not really needed. Thank you for your help.

[Runrig01]

So I have Romanus lesions, which as you say can indicate ankylosing spondylitis. I think if you are not under a rheumatologist, then you definitely need to request a referal. The pain you describe of easing when your moving, and worse at night is classic AS symptoms. I was on prednisolone for years before my diagnosis, and I still had lots of inflammation on MRI. You need imaging of your sacroiliac joints, which your gp can order an X-ray for now. A rheumatologist would probably repeat the mri as it needs to be a stir sequence mri to enhance inflammation. I wasn’t diagnosed till I was 51, despite suffering classic symptoms all my life, I had fused sacroiliac joints, as well as ribs being fused. If you do have AS you may need biologics to slow the progression. Here’s the criteria for getting a referral. Good luck. bmj.com/content/bmj/suppl/2...

[floating_ in reply to Runrig01]

I'm so sorry it took so long for you to get a diagnosis! How are you getting on now? I'm 28 so it still seems to be early if it is a spondyloarthritis issue. It's frustrating for me because while I have had back pain since I was a child, the quality of it has changed in more recent years, it never really goes away. I'm always very stiff and that's especially bad in the morning or if I've sat for a little while.

I am already on a biologic for Severe Asthma and Chronic Spontaneous Urticaria.

I'm not sure if my SI joints were included in the Whole Spine MRI, but I assume they were, I doubt it was a STIR MRI though.

Thank you for all your information, it's been really helpful and reassuring!

[floating_ in reply to Runrig01]

Just had a look at your link, and I do meet criteria for referral, I've also had psoriasis in the past which is associated according to that link!

[oldtimer2]

If you are already under the care of the rheumatologist - do you have access to a rheumatology helpline? You could ring that and explain, or ring the rheumatologist secretary and explain.

I would have thought you should seek a specialist opinion and if already under the care of rheumatology, they are the experts. They may have already considered the diagnosis but you didn't say why you are under their care already. It would cut out the need to see the GP, explain, persuade them to do yet another task of writing another letter of referral!

[floating_ in reply to oldtimer2]

Thank you!

Unfortunately no, although I do know the secretary's number. They just deal with my Ehlers-Danlos Syndrome though so might not be best placed to look into this? I suppose it can't hurt to enquire though!

[helixhelix]

As others have said, you need to get to see a rheumatologist. This is outside most GP’s expertise.

Generally different diseases cause slightly different type of damage to bones, joints ,cartilage, tendons, etc so an experienced radiographer will be able identify this. There is nothing extra suspicious about these Romanus lesions as the word lesions just means something is not 100% normal, and doesn’t mean cancerous.

[floating_ in reply to helixhelix]

That's what I was thinking!

Haha, exactly, that's why I looked it up, because it sounded concerning, but obviously I found it wasn't related to something more sinister like cancer.

Thank you for your help!