Lupus just curious

[jensen_lynne]

Can you have lupus when you don't realize you do? Can people have lupus without knowing it?

[Buffy14]

A bit of a vague question what is it that makes you think you have lupus ? Do you have any symptoms ?

[Barnclown]

Yes...

...I'm 63 and my lupus was diagnosed in infancy. As a youngster & student I was treated day to day + through emergencies but my parents & doctors told no one including me. I just thought I was "sickly"

So, when I moved to the UK @ 21 years old, the NHS took me on without records of my Lupus diagnosis & treatments. And I spent my first 30+ years in the UK experiencing progressive multisystem degeneration because my primary condition (SLE) received no effective targeted daily systemic treatment other than lifestyle management. Meanwhile I attended an ever increasing collection of NHS hospital clinics where various secondary conditions were diagnosed and treated + I was cared for regularly at NHS A&E every time things became especially dire. But throughout those years both NHS & private doctors simply didn't think to test me for Lupus (although they did test for MS (with result: neg))

Finally in my mid 50s the signs of immune dysfunction, connective tissue disorder & multisystem degeneration were so clear that a brilliant rheumatologist figured my lupus out & tested me. Lucky for me, I met the BSR required diagnostic criteria for diagnosis. At that point, my mother confessed they'd kept my infant onset lupus & treatment growing up secret. I'd never even heard of lupus, but my mother, who had witnessed my lifetime of chronic ill health & deterioration, simply said: but, dear, you've ALWAYS had lupus. Even 6 years on from this eureka diagnosis moment, I'm still thinking: Go figure! 🙄

6 years on from that briilant rheumatologist beginning to treat me for SLE, I'm in less pain, and have more stamina, resilience & comprehension than I have since my early 20s. Now my lupus is classed as 'moderate', and I take powerful daily oral combined therapy lupus meds. I also attend all my previous multisystem hospital clinics + a few more....and, generally all doctors can help me lots more cause they understand the incurable systemic illness underlying the conditions they are treating & monitoring

OK, my case is unusual...definitely not typical, but after 6 years of Lupus UK membership, including lots of time on this wonderful forum, I do believe there are quite a few others living with undiagnosed lupus for years, probably decades, before getting into the diagnosis & treatment process.

Sometimes I think maybe I was lucky to spend all those decades not knowing I had lupus, cause I learned a lot about self-help lifestyle management and I never let myself doubt I could somehow live my dream of studies, career & marriage.....but I do regret the constant suffering, isolation & depression I felt every day due to this diagnostic ambiguity... plus I regret the decades of alienation within the health system ...fortunately I'm a glass half full girl 😉 and I now know just how great the NHS can be

I hope something in there is useful & helpful

🍀🍀🍀🍀 coco

[Shaysuekirk]

Of course. Lots of people don't realize it at first and are misdiagnosed for years.

[jensen_lynne in reply to Shaysuekirk]

Thanks, I wish no one has lupus

[markb1113]

You can go for years with minor transient symptoms . I would say the moSt frequent symptom is fatigue. I think the average time to diagnose SL e is about 10 years

[nanleighh]

Yes, I had symptoms off and on from my 30s. Severe fatigue, leukopenia, joint pain intermittently, then in 2007 I had a year long episode of severe joint pain, fatigue, fever. I was worked up completely by my primary doctor and rheumatologist and was told I was fine because all my blood work was normal except low vitamin D. Then in 2014 I developed pretty significant joint pain, malar rash, muscle weakness, and fatigue. I then had positive ANA, positive anti RNP and elevated CRP. I was then diagnosed with lupus. It was scary but also a huge relief because I thought I was just chronically tired and unmotivated for years. Then all the pieces of the puzzle fell into place. It took me 30 years to be diagnosed but I look back now and I never pushed for further testing because I thought I was just tired from all the daily rigorous routines. I thought I had depression that was causing the fatigue. I had anxiety off and on which became severe in 2007 with that episode and I had to be treated for 3 years. You didn't really share if you have any symptoms but I just wanted to let you know in my experience I had vague and sometimes severe symptoms for years before diagnosis, so yes you can have vague symptoms and severe symptoms episodically and still have negative blood work for years and have an autoimmune disease. I wish the best for you in your journey and this is a safe place to ask questions. People are very warm and supportive here. Xo

[jensen_lynne in reply to nanleighh]

Thanks so much, do you get headaches every morning when you wake up?

[nanleighh in reply to jensen_lynne]

I do get a lot of headaches, and when I do get them I seem to wake up with them in the morning. I found that if I stay away from chocolate and sugary foods the headaches are less frequent. Also now that I'm on medication hydroxychloroquine, and prednisone low-dose, I do get the headaches less frequently. But getting headaches is part of the illness. Everyone is different and it's all trial and error with treatment. I'm glad you joined this form, and I hope you get some answers. Xo Nan

[4373]

I have the same question as my titer scores for Sjorgren's are very low and I am doing everything to keep them there based on the little knowledge the docs have. I am doing my own research also.

[diane1428]

Oh bar clown

How wonderful to read your story. I to am 63 and went thru very similar experiences. However my mothers reaction three years ago when finally I was diagnosed was well you didn't catch when you lived at home

My rheumatologist stated that I'd had it since I was 18 and left home when I was 19

I am very happy in the fact I was so late to be diagnosed as it has put this condition into perspective

I've lived with it this long I shall continue to do so. It's not nice feeling gritty. It is very painful sand I have aps with it. But hey I'm doing the living let the docs do the worrying. Regards diane

[Barnclown in reply to diane1428]

Hi diane: only just spotted your reply, sorrry! I ❤ your attitude! Life IS for Living👍👍👍👍👏👏👏👏🍀😘

[Paul_Howard Partner LUPUS UK]

Hi jensen_lynne ,

You've had loads of great feedback to your question from the community. It is very possible that somebody can have lupus without knowing it - most often this would be because they do not know about lupus and they are either not being taken seriously by their doctor or have been misdiagnosed with something else.

Is your question more specifically asking whether you could have lupus without any symptoms? Or is this about somebody who has symptoms but not a confirmed diagnosis?