Diagnosis query

Has anyone been diagnosed with SLE without a rash?

I have the markers in my blood.

Every other symptom but the rash and rheumatologist has decided it’s not lupus.

The fatigue is awful just now.

Thanks

[MusicalFurbaby]

If you mean the malar rash, yes, I’ve never had it but I’ve been diagnosed with lupus. It’s not an essential criteria or anything, and even though it’s a common symptom, not everyone with lupus has it. I have had other rashes though, and I get recurrent mouth and nose ulcers, which are one of the diagnostic criteria.

Don’t be afraid to get a second opinion. My first rheumy wouldn’t diagnose me either. It was only when I got a second opinion, through a word-of-mouth recommendation, that I got the diagnosis!

[HazelW]

I have SLE & have never had the rash. It is just one of many symptoms and everybody has different symptoms. Good luck with your treatment.

[nada28 in reply to HazelW]

Same with me!

[Blossom751]

I'm also diagnosed but never had the proper rash. I've informed my rheumatologist of sun sensitivity when I go on holiday and get exposed to strong sun for longer periods of time.

Good luck with your journey!

[marypw]

I’ve been diagnosed with lupus for 12 years and I didn’t have the common malar rash. My facial skin has been pretty sensitive in recent years and feels burning in hot dry conditions, with red wine or when I’m feeling unwell.

If you’ve got other symptoms and positive blood tests (e.g. ANA, dsDNA), I’d suggest you try to see another rheumatologist.

[SWinNorfolk]

I can reiterate what others are saying, I’ve never had the rash but diagnosed with lupus SLE

It can be frustrating to get the diagnosis, in order to get the health care you deserve. Keep pushing for a diagnosis, could you ask to get a second opinion with another rheumatologist?

For me since having hydroxychloroquine, balanced a healthy diet, good sleep and reducing stress, has helped me manage the fatigue and symptoms better, but that has taken time.

Hope you get the help you need and feel a bit better soon x

[Hidden in reply to SWinNorfolk]

I think with the state of the NHS at present I’ll be lucky to see the current Consultant anytime sonn, never mind another one ☺️

[SWinNorfolk in reply to Hidden]

I know it feels relentless, but even if it takes a long time, worth pursuing to get the diagnosis you deserve. Totally get how it feels though and know if my feels tough xxx

[Hidden in reply to SWinNorfolk]

I’ve been back and forth with them since 2014.

This is the the first time SLE has come up in my blood work.

[Purplebox]

Hi there, I was given a definite diagnosis of SLE Lupus in 2018 due to a high blood ANA readings. I have not had the facial rash either but do get other skin rashes which appear from nowhere and are a devil to get rid of. Bouts of mouth ulcers and I need to avoid the sun as much as possible. From what you describe I would really press for a second opinion and don't take no for an answer - could someone go with you to the appointment as that may help. Not sure which health authority you come under but I would google your local hospital and see what that comes up with. Good luck and hope all goes well.

[Hidden in reply to Purplebox]

hello, I’m in the uk so under my local hospital, also work there….going to speak to gp tomorrow and go from there.

I’m fine in sun etc and never had any kind of rash.

Not sure what criteria he is using given the rest of my issues

Also have a permanently swollen leg but mri came back fine so it must be tissue swelling!

[Poshcards]

I have SLE and never a rash, I think it's Discoid Lupus that has a rash on the face xx

[Krazykat26]

I have cutaneous lupus so main symptoms are rashes..however I haven't ever had a Malar rash. As others have said if you've got the blood markers I would seek a second opinion. Fatigue is debilitating..I feel for you..am glad you're here. It's a very supportive group and although we have things in common each and every one of us is unique!! We have a terrible habit of not fitting into doctors boxes/ideas about Lupus.Have to say as a kid I loved Smarties 😋Welcome to the group 💜🌈xx

[Cath22rinec]

I have had Lupus for for 14 years and never got the rash until recently and it’s very mild.