LUPUS UK
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CTD -How often are you seen by specialist and how often do you have tests

So as mentioned befkre my lovely, understanding and supportive dermy who diagnosed me retired over xmas. Be told me i'd be seen every 3 months for first two years to see how disease developed. Then i'd be seen every 6 months. The new one is nice enough but told me i only need to be seen anually and even people with established lupus get seen anually unless unwell. Is that true? What tests do you have done regularly and how often?

To be honest, i have not been to unwell. My main issues being the LPR or silent reflux symptoms on my throat which i cant shift and possibly a very small benign (adenoma) deep in my parotid gland wbich if confirmed needs removing with major risk to facial nerve damage. Still this disease scare me and i feel my body is not the same since diagnosis and feel i should be seen regularly like my first doc said.

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Hello, sorry you’ve lost a lovely dermatologist. Have you not got a rheumatologist too?

I think every hospital is different with how often they see you but think it’s normally every 6-12 months for milder non organ threatening lupus. I have been seeing someone every 6 months since diagnosis 8 years ago but they are always willing to book me in more quickly if I’m flaring.

I’ve been really ill this past year with brain involvement so was put on monthly appointments and anytime we rung in any worsening of symptoms, he’d book me into clinic that week. I’m now on fortnightly appointments but think that’s a combination of having been really unwell and reacting badly to drugs but mainly because I have a very amazing and thorough rheumatologist so not sure this is usual.

I see my dermatologist every 6-12 months and that’s enough for me. You’re right you need to be monitored though, especially in the early days but you can almost definitely ring them if symptoms worsen and ask them to fit you in. Seeing you in a flare is more helpful to both them and you. I spent years going at my 6/12 month appointment when I was fine then telling them about the flare/s during that year when it was too late to help me 🙄

Hope your symptoms stay manageable

They should do bloods and urine but again think that would be more likely in a rheumy clinic than dermatologists

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Thank you for your reply! No I mentioned being seen by rheumy instead but he was not interested. The reason I am under a dermatologist is because my main issue was a circular rash in my chest that appeared 2 weeks after a holiday to Spain that the original dermatologist thought it suggested subacute cutaneos lupus considering i had the anti ro bloods. I had a face burning for 3 days after developung 3 more dermatofibromas after my original two which made me think i had something like these after the circular rash. First docs were not interested but after bloods came back positive i was sent to original dermatolgy doc and was told i had an undifferentiated connective tissue disease. He did not think the face rash/burning thing was the butterfly rash. Might have been cold burn! Apart from symptoms above i guess i am quite lucky hence why i guess he things i don't need to be seen so often. Your last year sounds pretty tough. Hope you get back to normal very soon and this nasty flare calms down. I never pushed for rheumy as dermatologist seemed to know what he was doing and seemed to be very willing to listen and see me regularly anyway. But now i'm not so sure! Don't want things being missed etc. I worry they now have only one specialist rather than two and he's just trying to cut his workload...

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Does sound like you need a rheumy too - nothing to lose by getting referred?

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