one step closer to diagnosis

[PennyRoseFlow]

hello all

I posted here back in July after a private rheumatologist said my ongoing severe joint pain could be lupus based on the rashes (mostly malar) that was intermittently an issue.

I met with NHS rheumatology in October who couldn’t “fit me neatly into one CTD”. Anyhow, they started me on steroids again in November, had more bloods and follow up in December and wrote to me before Christmas that they were starting me on hydroxychloroquine in January: yay, a way forward even without a firm diagnosis.

However I was then hospitalised before Christmas for three days and it turns out it’s something quite rare called ischemic colitis. I had a follow up with gastroenterology today who laid all the evidence out and he believes it was caused by Lupus. He’s writing to rheumatology with their position on that too.

I did search this forum at the time but couldn’t see anyone mention this as a complication of lupus. I guess I’m posting as it’s still of a firm diagnosis but maybe one step closer and more likely lupus? Gastro are going to check my colon in 6 weeks to make sure it’s fully healed, and he also wants to ensure I get on the right treatment to prevent it happening again. He’s also going to highlight the heart concern (tachycardia pretty much throughout) to make sure rheumatology keep an eye on this.

Is there anything else you think I can do? Either from a research perspective, looking after myself perspective or in terms of tests etc? Thanks all x

[catblue1865]

well done, they are taking you seriously and you've got a diagnoses, or will have soon, sounds like you are being treated with compassion too, i;m so jealous of that (nothing personal as obviously we*ve never met. where is this wonderful hospital? or perhaps better not say, im never sure of the guidlines on this, I know were not supposed to mention drs names which seems sensible.

[PennyRoseFlow in reply to catblue1865]

I think I’m getting there, it’s been an incredibly painful journey. But to be honest I think this ischemic colitis is the evidence that’s probably tipping them in favour of lupus. The test that came back positive is a clotting one? So it may be impacting my blood I don’t really know!

But to be honest I think it’s been symptoms (can barely walk but steroids have helped), some blood test results (constantly high CRP, high platelets, some positive lupus bits) and scan results that may all be driving the right diagnosis.

Won’t know until I see rheumatology but it could also be hopeful and still undiagnosed then. Who knows.

This is York hospital x

[KayHimm]

PennyRoseFlow -

Your situation shows how rheumatologists don’t want to lock themselves into a diagnosis and no matter what box they put us in they have to stay open to all complications.

You have a good team. I hope you continue to improve.

K

[PennyRoseFlow in reply to KayHimm]

Why is that? Is it incase they are wrong?

They knew in October there was something “rheumatological” going on but didn’t start treatment until 2 weeks ago. I do wonder if it had been started earlier if the colitis would have happened. I guess no point thinking like that but it was terrifying when the colon thing happened. I worry about the damage that’s being done to other parts of me.

I can’t wait to finally be pain free! I hope this hydroxychloroquine works x

[KayHimm]

That would be a good question for your gastroenterologist and rheumatologist. They do what is evidence-based at a given time. As you said, your involvement is rare.

I wouldn’t focus so much on the diagnosis as how they are going to treat your most pressing symptoms.

To answer your question, an inaccurate diagnosis is not helpful. There are ways of describing early and unclear cases. Often they treat symptoms regardless. You might want to ask why they didn’t do that.

I hope your treatment takes effect soon. Sounds like you have had a rough time.

[MusicalFurbaby]

Hi PennyRoseFlow, I’m so happy to hear about your progress! Yes, it is common to have gastric complications arising out of lupus. I had a huge hiatal hernia last year, and even though hernias are common, they suspected lupus had caused inflammation in the stomach which led to the hernia, plus reflux, ulcers etc.

I have altered my diet to a low-carb lifestyle, and I found that made a big difference to my ongoing gastric symptoms (constant nausea, bloating, stomach cramps, diarrhea, etc. So I try to minimise high-carb foods, such as bread, rice, pasta, potato and pizza, and I eat a lot of protein and good quality fats, especially olive oil. I still get the occasional gastro, but nowhere near as bad as it used to be!

As for the rest, let us know whether you experience any improvements on the hydroxy, and how you get on with the doctors. It can be a real zigzag, the road to diagnosis, but keep plugging away. I feel your pain! ✨🌈🌻