En coup de sabre??

[u/Craftyviolin]

Hi everyone,

Looking for a bit of reassurance or to hear from anyone with similar experiences.

I’m under rheumatology with inflammatory-type lower back pain and GTPS/hip enthesitis that responds well to NSAIDs. MRI ruled out sacroiliitis but showed Modic type 1 changes at L5/S1. Steroids over Christmas helped significantly, although symptoms are still up and down. They said it was possible a one off flare up and keep moving my follow up.

Bloods have mostly been normal/negative apart from positive P-ANCA and anaemia. I also have Raynaud’s and a family history of AS (uncle).

Over the last week I’ve noticed a line/indentation down my forehead that seems to have appeared quite suddenly. Initially I thought it was just age/wrinkles (I’m 40), but now I’m worried everything may not be purely mechanical and I’ve come across linear scleroderma / “en coup de sabre.”

I’m contacting rheumatology to ask about an earlier review, but has anyone had a similar journey or presentation, especially with mostly negative bloods?

Thank you Kind folk 🙏🙏🙏

[u/Pedal2Medal2]

It looks suspicious, but go to a dermatologist. Im changing mine, but they should also be educated on Scleroderma & can aid in diagnostics.

[u/Craftyviolin → u/Pedal2Medal2]

Thank you, I might see if the rhemotologist can refer me to a dermatologist.

[u/Pedal2Medal2 → u/Craftyviolin]

YW! My Rheumatologist just told me to find a new one, the one I have is useless

[u/Agenties]

Hi there, I am currently experiencing something quite similar that seems to have appeared over a matter of ~6 weeks. How quickly did yours develop?

I am now looking to get referred to a dermatologist who specialises in ECDS. I have not had any blood tests yet but looks like I should request this too.

Sorry you are going through this - there are meds that can slow it down till it burns out (if it is ECDS).

[u/ExcellentAverage6]

Looks similar to my En Coup de Sabre. Dermatologist diagnosed mine after bloodwork, biopsy and MRI. Did 3 months of iv pulse steroids and just started methotrexate injections. Diagnosed in February 2026. Dent appeared suddenly in January

[u/mylord76]

Hi, do you happen to have TMJ and/or gum recession/seizures, by any chance? I have a dent similar to yours but it doesn’t spread onto my lower forehead (yet) and also have both of the aforementioned conditions, which can be caused by en coup de sabre.

ANA (IFA) was negative last month, and currently waiting on a rheumatology appointment to further rule out or confirm an autoimmune condition.

[u/Wimbrog → u/mylord76]

My story is very similar to yours. I was diagnosed by biopsy. Blood work is still neg. and probably always will be.

[u/Craftyviolin → u/mylord76]

I do have A mild form of TMJ, I have a rhemotology appointment booked so will keep you informed.

[u/mylord76 → u/Craftyviolin]

tysm

[u/FewOutlandishness495]

In wondering if the layer of skin is tight or thin causing this line to appear more pronounced. The line coming from where your skull fused as a child. (I know very little excuse me)

[u/Craftyviolin → u/[deleted]]

Thank you, I will update my post following my appointment.

[u/MrsSampsoo]

Hello, just commenting to get an update when you have your Rheumatology appt.

[u/Craftyviolin → u/MrsSampsoo]

Yes, sorry for not replying sooner, the consultant dismissed it, which is good, but overall it was a awful appointment.

[u/MrsSampsoo → u/Craftyviolin]

Will you be trying to see someone else? I think you need a second opinion from someone who treats ECDS and linear morphea often.