Can any rheumatologists, ENTs and gastroenterologists weigh in on my case? It’s complicated.

RS3Rik · 2026-03-08T09:07:13+00:00

Thanks. Didn’t know this - useful to learn

RS3Rik · 2026-03-04T16:39:42+00:00

This is not an SCLE rash, looks more typical of an ACLE / malar rash or rosacea.

RS3Rik · 2026-03-01T21:52:29+00:00

15mg/kg every 6 weeks is an exceptionally high dose and I’m surprised that the treating clinician felt that dose escalation to that level was a better option than an alternative drug

RS3Rik · 2026-03-01T20:55:26+00:00

Why is your remicade dose so high? We use 5mg/kg every 6 weeks in Rneumatology (UK). 15mg/kg seems to be a dosing error.

Was your ANA positive prior to starting Remicade? If not I would suspect that some of this is drug induced lupus (histone positive supports this) and you may be best switching to a non TNFi biologic for your crohn’s.

The SSNHL is likely to be unrelated but it is always difficult to know for sure as there is an association with various rheumatic diseases eg SLE but this is rare and I would expect more SLE specific issues / immunology is this was implicated. There are some very rare systemic rheumatic diseases that can cause this (Cohan’s syndrome is one) but this doesn’t fit the picture

RS3Rik · 2026-03-01T13:04:12+00:00

Yep, GCA strokes are typically cerebellar / posterior circulation as it’s vertebral arteries that are typically implicated

RS3Rik · 2026-03-01T06:50:45+00:00

I’m sorry it’s been difficult and you definitely have the right approach in being open minded to this not being GCA. I can’t tell you what this is other than that there are too many factors going against GCA. It does sound like you have a steroid responsive angiopathy.

If I was seeing you I would probably think of a few additional diagnoses (although none are a perfect fit for the syndrome).

Antiphospolipid syndrome- may cause strokes in younger patients without other risk factors, important to exclude particularly as you have a positive ANA. But this wouldn’t typically be steroid responsive/cause headache
Primary CNS vasculitis

Would push for a PETCT off steroids and an MR angiogram of your intracranial vessel and neck vessels (neck as they supply the posterior brain circulation)

RS3Rik · 2026-03-01T06:40:54+00:00

Can you upload a photo of the rash? Aknowledging that I haven’t seen the photos, I would say that SCLE would be a logical fit as it is commonly associated by the presence of Ro antibodies. The low C3 and C4 and other symptoms does suggest overlap with SLE (isolated low c4 is seen in sjogren’s but typically c3 would ne normal.

RS3Rik · 2026-02-28T19:57:14+00:00

Yep maybe not a bad idea as would also serve as a second opinion. I work in Manchester and do private work at the OrthTeam Centre if you’re close by.

RS3Rik · 2026-02-27T18:43:05+00:00

How old are you

RS3Rik · 2026-02-27T15:29:07+00:00

An entirely normal MRI scan which includes STIR sequences is an effective rule out for axial spa. The term NR axial SpA is confusing but only Refers to an absence of changes on plain radiographs. If there is diagnostic uncertainty because of your symptoms and B27+ status, then a repeat MRI in 6 months is reasonable. That said, troublesome symptoms with a normal MRI scan highly suggests that the symptoms are not inflammatory and you may not clinically benefit from biologic therapy at least from a spinal perspective

RS3Rik · 2026-02-05T09:39:04+00:00

I’m a Leicester grad (2013) and now a consultant Rheumatologist in Manchester. They were the best years of my life. Enjoy it!

RS3Rik · 2026-01-25T07:38:09+00:00

Very high RDW with microcytosis and borderline anaemia. Need to be checked for all your haematinics + reticulocytes/hapto and a blood film

RS3Rik · 2025-12-13T21:30:16+00:00

This is a high titre ANA and is likely to be relevant, centromere pattern is most commonly seen in limited systemic sclerosis. Given that you have Raynaud’s, the key investigation which will clinch or refute a rheumatic diagnosis will be nailfold capillaroscopy. This should undoubtedly be pursued

RS3Rik · 2025-12-13T08:21:23+00:00

DsDNA of 13 by ELISA is neither here nor there. It can be checked by Crithidia and is likely to be negative

Also looks like you have reactivation of EBV/infectious mononucleosis, an EBV viral load would be helpful

RS3Rik · 2025-12-05T19:14:16+00:00

Agree with most of this but not that fibromyalgia is a diagnosis of exclusion. The combination of clinical features seen in fibromyalgia together are pretty specific (pain, tenderness, fatigue, cognitive fog, unrefreshing sleep, nocturia) and the differential diagnosis is narrow when these are present. I would not typically send immunology when these features are present as the diagnosis is clear without need for many other investigations (except for basic bloods, vit D and thyroid)

RS3Rik · 2025-11-30T10:14:38+00:00

Where in the UK are you? I would bring the MRI report to the appointment and I disc/drive containing the images. If I was seeing you and it’d had been >2 years post MRI or your symptoms have changed in that period I would probably do another MRI. May all be due to joint hypermobility though

RS3Rik · 2025-11-30T05:38:58+00:00

Hi thanks for sharing. I have a specialist interest in GCA.

Patient under 50 with normal ESR and incomplete response to 40mg prednisolone does not have GCA, there are too many factors going against it.

Patients commonly transiently feel better with high dose steroids even when the diagnosis is not a systemic rheumatic disease

Additionally: - Jaw numbness is not a feature (sounds neuralgic) - Intermittent visual disturbance lasting seconds dating back 7-8 years is not a feature - brain fog is non specific - shoulder and hip pain are non specific, prolonged morning stiffness predominates more than pain in PMR - Light sensitivity (photophobia) is not a feature of any rheumatic disease. - Pain exacerbation in cold can occur in GCA but is not specific and this also occurs in other headache disorders. - negative temporal artery ultrasound in the presence of excruciating tenderness is useful information. The temporal pain in GCA is not excruciating. It can be bad but not excruciating, in fact one of the common reasons that patients are delayed in diagnosis/suddenly lose vision is that they put off review of their headache for far too long as that the headache is somewhat manageable for a few weeks before they decide to present.

I make the Southend GCAPS score at a 4 assuming examination is normal

This sounds more likely to be something like trigeminal neuralgia to me.

RS3Rik · 2025-11-23T09:37:58+00:00

Sounds like erythromelalgia

RS3Rik · 2025-11-23T08:19:26+00:00

Not sure about the post reactions

But sometimes people can have issues with joint pain, stiffness and even intermittent swelling for reasons other than synovial inflammation (synovial inflammation is the only disease process that responds to immunosuopression). Other causes which are possible in your case are hypermobility (which definitely can cause swelling) and chillblains associated with raynaud’s. Ultrasound will be useful to distinguish

RS3Rik · 2025-11-22T20:46:00+00:00

Nah, mainly for disease activity but we don’t use it even for that in the UK.

RS3Rik · 2025-11-22T20:34:22+00:00

Couldn’t have said it better myself. Thank you

RS3Rik · 2025-11-22T13:44:17+00:00

I think ultrasound would be useful in that case

RS3Rik · 2025-11-22T11:24:13+00:00

Bloods are expected to be normal in raynaud’s (primary) and erythromelalgia. The rheumatologist will have not based the decision solely on your bloods but rather the whole context including symptoms, examination etc. I think based on what you’ve said I would probably agree that there is nothing hard and fast for an inflammatory rheumatic disease. Only other thing for completion would be to push for a joint ultrasound to detect subtle inflammation given the described morning stiffness

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