Is it Lupus?

[GottaAsk]

hello all good to meet you here. I am in the process after many years of battling inflammatory issues, of finally seeing a immunologist and rheumatologist in the next couple months but I have noticed my face rash getting stronger over the past year. I guess I am just curious if this is likely/possibly lupus they’re going to be seeing me with? My doctors kept it pretty cryptic until he sent me now to the specialists and didn’t say much else but you need to see them before anything. I would like to know what you think that have been diagnosed. My mother also has lupus. I am male so it’s not as often so just curious here. Thanks in advance for your time!

(PS no it’s not a sunburn it’s been there slowly getting worse for about a year but the sun does make it go stronger And more red but nowhere else on my face) here is two photos a week apart as example. Does that look like butterfly rash? It just won’t go away. Some other symptoms over the years:

I have joint inflammation seen on X-ray

Gastritis constant for years and ulcers

Muscle pains that come and go

Dry eyes that come and go

General tiredness and malaise off and on

Headaches that come and go

Hands and feet raynauds in heat and cold

This rash on my face

Plus some others but that’s the quick list

[Tanitani]

does sound like some sort of autoimmune disease. Mctd is more comon with males than lupus, but "more common" doesnt mean impossible for a male to get lupus. Hope you get diagnosed and a good treatment soon!

[GottaAsk in reply to Tanitani]

thank you! My first appointment is in 2 weeks but I know it can take years for any conclusive help I’ve been informed. I’m sure they’ll start with lupus ANA tests etc then go from there. Thanks again

[Tanitani in reply to GottaAsk]

why years? With positive ANA and positive specific autoantibody you can get a proper diagnosis and treatment i coupke of days.

[GottaAsk in reply to Tanitani]

that’s what happens when doctors treat a symptom and not a disease. It’s very common and in fact on average it takes 7 years for a diagnosis of lupus to happen. My mom and sister had the same. Anyhow, in my case they would see gastro Problems then treat it or the “flare” would subside enough. They thought I had Crohn’s. Then it got better and it stopped there. Then gastritis landed me in the hospital. Once again treated the ulcers and ended there. Carpal tunnel surgery ended there. Joint pain they did steroids and ended there but this last one was what pushed my new doctor to look at the whole picture. Anothing thing is here in Switzerland they don’t share files to other doctors so each time I switched due to insurance model changing etc they only saw me as a new patient. Then things like the rash is a year long happening now so this combined with the inflammation seen on X-ray and this new doctor looking through all my history it all lined up to finally be sent to a specialist. So it’s been a long road for various reasons and just happy to finally go to a specialist. I will say another thing is I hate doctors and avoided it even when my mom told me to seek a specialist. I always felt crazy or they wouldn’t take me serious since a lot of things come and go. I’m sure many here know that feeling. So let’s see what happens now.

[Tanitani in reply to GottaAsk]

correct. But you are now going to a proper specialist, so if you do have autoimmunity you will know fast.

[GottaAsk in reply to Tanitani]

yes absolutely! I hope it’ll be streamlined now to be honest. I have been keeping diary for about 8 months total and photos etc too. Shouldn’t be too tough if that ANA is positive. Otherwise as you said it may be one do these other ones similar.

[Fredhouseboat]

what may be relevant is that the rash you have spares the naso labial fold which is relevant for lupus and to me I think I can see the formation of a slightly indistinct malar rash .you also list many other features of lupus , so I hope you get a proper investigation.

[GottaAsk in reply to Fredhouseboat]

thanks Fredhauseboat - it does definitely stop right where the naso fold is. I never noticed until you mentioned that. It is white from there down but red on cheeks and across nose bridge.

[MusicalFurbaby]

Hi GottaAsk, good on you for reaching out here, and for seeing an immunologist! Yes, your symptoms do sound autoimmune, including the rashes, reactivity to direct sunlight, joint inflammation, reynaud’s, dry eyes and general unwellness. I don’t know if it is lupus specifically or another autoimmune disease, as many AI diseases have a huge amount of overlapping symptoms! But a good immunologist will be able to sift through all of that. Good luck and please do let us know how things turn out!

[GottaAsk in reply to MusicalFurbaby]

thanks so much for this response. Only one week now until my first appointment. Definitely nervous.