I haven't got lupus!

Hello all. I went to the rheumy consultant this week, but he cannot diagnose lupus, except for mild lupus. I have many of the symptoms but one of the crucial teast doesn't show that I have lupus. So I'm to continue with 200mg hydroxychloro/day, 50+ face and sun cream, and take time out when I get tired. Thank you for all your help and support, I'll be thinking of you, and with you in spirit. xxx

24 Replies

  • Hi Faetheness

    Mild Lupus is a diagnosis. Is your Consultant keeping you under review as symptoms can change?. For years crucial Lupus tests have been negative for me except ANA and I've had the diagnosis of Undifferentiated Connective Tissue Disease!. Glad you can continue with Hydroxy and your still eligible for this forum! Take CareX

  • My tests came up positive and I was diagnosed with mild SLE because of that.....wish you well xxx :)

  • Which test was it? I'm in a similar position. extremely high ana, all the symptoms but rest of tests negative. It doesn't mean we don't have lupus just that right now they can't officially diagnose.

  • Not sure which test isn't confirming lupus. When I find out, I'll let you know. Also, he thought I had a butterfly rash, but I haven't - the dermatologist wouldn't do a biopsy! It's a reaction to strong sunlight or strenuous exercise which gives me glowing cheeks! It's better since I started using Factor50+ face cream.

  • sun is what brings out my "butterfly" and unless you have discoid lupus biopsy will mean nothing. there are a host of symptoms and not everyone gets the butterfly rash or even the same set of symptoms. there are something like 13 different symptoms that are indicative of lupus and to achieve a dx here in us you need to have at least 5 (i think) if nothing shows in bloodwork.

  • I was told I have sero negative poly arteritis by my original gp backin 1990's and there si the same result for lupus -sero negative lupus.??

  • I would agree mild lupus is a diagnosis a consultant told my daughter sometimes all test can come back neg but they know from the symptoms someone has Lupus.

  • All my tests - ANA, ENA etc have come back negative but I have every single symptom of classic Lupus with Sjogrens but I haven't even seen a rheumatologist yet - GP thinks I am nuts/faking. Please see my original post on here if anyone can help - so ill but tests are making me look like a fraud :-(

  • My suggestion is that you remain upbeat about this, follow your treatment plan & stay alert to any symptoms that become persistent and don't respond to your meds

    Cause, yes, I tend to agree with all these replies....with no dramatic blood results, but instead with bloods results that do mean plenty when considered across the board by lupus experienced drs, my diagnosis remains in progress even after 3 years...even so, I KNOW FOR SURE, that my vvvvvvv lupus experienced rheumatologist IS confident I've spent my life with lupus spectrum & secondary conditions because she began lupus prescription drug treatment based on physical examination & medical history alone, even before seeing my bloods results and assessed them relative to what she was hearing from me and observing through examination.

    Since that treatment began, my feelings is that one of the main things encouraging & impressing rheumatology regarding my diagnosis, is that I am responding positively to treatment with daily lupus prescription meds....this prescribing has been gradual, with new meds being added progressively, in order to find a combination of meds that can minimise my symptoms across the board...So, in the first 2 years I started daily hydroxy & amitriptyline, then last year I added prednisolone tapers, and then in jan 2014 I added daily mycophenolate. As a result, I'm now feeling better generally than I have since the 1970s.

    I'm 60, and we now know that my lupus was diagnosed when I was an infant & teen, but no one, including my mother, told me, and when I moved to the uk at 21, those lupus diagnoses got totally left behind....and my version of lupus progressed unhindered, except for lifestyle management & fire fighting emergency treatment etc

    Take heart, take care & good luck

  • Hi barnclown. Am intrigued as to what you mean by fire fighting emergency treatment etc...!!!!! Sorry in advance if I missed something x

  • Oh yes. Haven't we all pretty much had this sort of thing....stuff suddenly becomes urgent/emergency after you've spent whatever amount of time being told that symptoms you've persistently queried were "normal"...and then, when whatever it is goes ballistic, drs start whizzing around...you end up an inpatient in isolation or 'hey presto' having surgery....hard to complain now cause I'm getting such close & careful expert attention....

    Anyway, now my medical team say these postponed or 'mis' diagnoses were mainly due to underestimation of symptoms which, had my SLE been recognised & treated, would've hopefully been reacted to rather differently ...examples: septicaemia arising from infected tendons.....osteomyelitis in upper jaw due to failed rootcanal work left to simmer years until it finally blew up into my sinus....chondrosarcoma that exhibited classic signs of systemic illness but was interpreted as arthritis for 14 years of growing bigger & bigger until speedy amputation....paroxysmal partial paralysis caused by spinal joint tendon tightening, spondylosis & top cervical joint synovitis...&on&on...as each crisis was dealt with, drs basically treated the emergency quite effectively, but failed to recognise the systemic conditions underlying & exacerbating the situation....so, each time, I was left to continue doing the best I could via lifestyle management mostly...until the next firefighting episode

    Thanks to this forum, I've learned to get these episodes in perspective...they were scary, they are serious, but they seem insignificant compared to the often highly problematic & unresponsive, acute organ threatening matters so many of us are coping with....not to mention the crohns crises my husband has spent a lifetime surviving

    anyway, thanks to the nhs taking appropriate emergency action, I'm still here and mobile! And now a brilliant nhs rheumatologist has recognised and is treating my version of lupus with great skill & insight.

    a long reply to a short question....you got me going, 6161!!!!!!


  • Sorry barnclown, didn't mean to upset you. You could have said it was a form of expression to describe your past emergencys. I thought you really meant, fire brigade....hahaha...that's what I meant by saying had I missed something....thought your house had burnt down....apologies again..x

  • You're a sweetheart: please, no need to apologise!

    And yes: good joke!!! no fire: the house is still standing

    And I am actually thanking you cause it helps me a lot to just tell you about this stuff....it's kind of branded on my soul. I know you understand....but I do feel the need to say "sorry" cause of how I go on & on...


  • I have to agree with the others - if he's treating you with hydroxy and says it's mild lupus, then you have lupus and it should be monitored for life. It may not be very progressed right now, and the meds will help with that but mild lupus isn't a different diagnosis to lupus, it's just a reference to the degree of your symptoms. And you don't have to leave this forum even if you are undiagnosed, let alone being treated, so please stick around :) x

  • Great reply!

  • Good advice, especially that I should continue with being HERE :) Thanks x

  • Mine is diagnosed as mild. I have subacute cutaneous lupus (SCLE) . Although my lupus is mild and hasn't attacked my internal organs so far, I have virtually all of the other symptoms that go with lupus. I know that this chronic disease changes all the time, I could go into remission, I could suffer from my symptoms as they are forever or it could get much worse. Not knowing is part of accepting this disease. But I would agree with the other replies, mild lupus, is still lupus. You are still on medication for lupus and still taking precautions for your photosensitivity. It is good news, but beware if any changes in your symptoms and get professional help. Best wishes.

  • Many, many thanks to you all. I will keep in touch, I'd like to hear how you all are getting on with Lupus Life! But ... another question for you: I have very puffy eye lids, which ofetnseem sun burned in spite of F50+ cream. Is puffiness anything to be worried about? I wondered if it's a side effect of hydroxy? Keep up the good work. x :)

  • plaquenil is one of the drugs that cause photo-sensitivity. also, photosensitivity is also one of the major signs of sle - both outdoor sun and indoor fluorescent lighting.

  • Hello. I have never experienced that symptom. But I do tend to wear my sunglasses non-stop. I can't stand the sun in my eyes at all these days. So what with 50+ sun cream and sunglasses plus a hat if I am to be out for any length of time, my eyes aren't exposed. Maybe you should see your GP? Could you be more photo-sensitive than you first thought? I hope you find the answers you need. Wendy

  • It's hard to diagnose. I had a skin biopsy on my head over two years ago which kick-started my treatment. it came back as discoid lupus. I had the butterfly rash too. Still have. Though it's much worse elsewhere and has been for over two years. Last month was the first time in two years I've been able to venture out in short sleeves without scaring people. My legs are still quite bad. No shorts for me in this hot weather. I haven't had a hot bath/shower for over two years as it's so sore I can only tolerate lukewarm water. My health rapidly went into meltdown after diagnosis. Crippling joint pains, bouts of paralysis, collapses, hair falling out, went blind in one eye, all on top of my horrific skin. When all my skin fell off, I had two biopsies on my leg which came back both not discoid lupus, or anything. Another biopsy on my arm said same. Even at the worst of times when I was clearly not well, my blood tests came back with no real raised lupus markers. All the consultants I've seen (rheumys, dermatologists, neurologists, orthopaedics, ophthamologists) agree something's not right.

  • Poor you, what a horrible way for you to be. It doesn't take a specialist to see that something's not right. Hope you get sorted out a.s.a.p. I've got to go back next year, to see how my "mild"/"non" lupus is.

  • I have to admit that I am very impatient...it seems the treatment progresses over some time "slowly" before you actually start to get better...I'm probably not the best "patient" as a result. I expect all the symptoms to get better quickly.. :-( and that usually wouldn't happen with Lupus

  • mild lupus is lupus. i also have mild lupus and have been told by my doctor that "mild" lupus merely means you do not have active organ involvement. yet. i hate to rain on your parade, but i feel compelled to say you should not just dismiss this because of testing. i have a dx. and actually have sle, but in the previous 8 years, it only shows in my bloodwork occassionally. don't know why, or the medical aspects of it, but in spite of no results showing in blood i do continue to suffer from this disease. get a second opinion and maybe a doctor who understands this very basic fact. many people suffer their whole lives with this disease and NEVER get an actual diagnosis.

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