I wonder why Lupus takes a while to show up!? if ever ? views please !?

To recap .... 5 positive ANA s symptoms and red faced over cheeks and nose, but one blood test has come back negative !

My question is ..... how long until diagnosis did Lupus show itself in a blood test ? I know it may never but am curious ! x

I didnt ask gp to refer me to st thomas s , i dont know why , Now i'm thinking maybe i should have !?

23 Replies

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  • it's because there IS no blood test that will confirm that yes, u definitely DO have lupus, the bloods r merely used as PART of a diagnostic of lupus. Because it mimics so many other conditions it makes it so difficult 2 say yes, it IS lupus, that's why it can take so many years 2 confirm & give a positive diagnosis. U'll get there honey x

  • Chin up u will get there. For me it was only 1 very strong positive and luckily seeing my gp right in the middle of a flare. He referred me to his rhumie friend. I was also armed with as much info I could find and wrote a 2 page list of symptoms and why I thought I had lupus. In the end I never needed any of this. I think I am one of the lucky ones. I do not know where u r but my rhumie is amazing. He runs a private clinic if u have cover? I hope u get an answer soon

    J xx

  • There is, in fact, a blood test which will confirm SLE - the LE cell test. I assume this may be the one for which you tested negative Larissa (?). However false negatives are possible. If I were you, I'd definitely ask to be referred to St. Thomas's at this point. x

  • The LE cell test is not a definite 'Yes, u have lupus' (sorry to disagree), it simply measures the presence of a certain cell found MOSTLY in SLE sufferers. About 50 to 75% of patients with lupus have a positive test. Some patients with rheumatoid arthritis, scleroderma, and drug sensitivities also have a positive LE cell test.

  • Had an opportunity to ask my Rheumatologist about your comment this morning Sher. He's never had a patient with positive tests for ANAs and LE cells develop anything other than SLE but aDNA must also be present. He also told me, Larissa and MSTR, it can, in some cases, take up to 5 years from onset of symptoms before bloodwork gives a firm diagnosis. Hope that helps. Good luck with the appointment at St. Thomas's Larissa - hope you get one!

  • Merely repeating what I've been told by every Rheumy & Haemo I've seen. What I've read on the net seems 2 back it up too & if this IS a definite test, why isn't it used 2 diagnose lupus, surely if it were as simple as one test, people would b diagnosed much sooner than they r? Guess nobody can agree on every aspect of the diagnosis criteria then as if they did, it wouldn't b such a long, difficult drawn out process :0/

  • Thanks .

    I have sent my gp a letter asking to be reffered to st thomas x

  • Fingers crossed ;0) x

  • Well so sorry to put a damper on things but I really wish things would show up quickly for me. I Just had rheumy appt today and still have a UCTD diagnosis when I was so certain that I would go forward with a more definite diagnosis. I know UCTD is meant to be a worthwhile diagnosis, however, it does not seem to fully justify what our body is going through. I wish they could just say it's either RA or lupus with elements of myositis or schlerderma. Dammit I know I have all the symptoms for a clear diagnosis now. So frustrated:( It feels a long road to diagnosis sometimes.

  • I know my lovely, it's an absolute pain in the arse. It's a shame we don't have more specialists in lupus. Maybe they need 2 look at the criteria 4 diagnosis again, it must b so worrying, not 2 mention disheartening 2 b just stuck in limbo :0(

  • If you are getting disease modifying treatment for autoimmune connective tissue disease and symptom relieving treatment, it doesn't really matter in practice what it is called. Increasingly, doctors are not diagnosing SLE unless it is 100% certain which means a total fit with the general criteria, and that usually means there is at least one of the four lupus specifics present. If there are no specifics for any of the A-I CTDs they diagnose UCTD. This is as 100% valid as an SLE/ Sjogren's/ etc diagnosis!

    How lucky you are not to have the "stigma" of an "SLE" diagnosis - the effects it has on getting insurance, even in the UK where health insurance per se isn't an

    issue.

    I have an "SLE" diagnosis - it is *ridiculous*. It's just because I have enough criteria. This means I have very bad specific lupus skin, arthralgias, two antibodies and photosensitivity and on the side, fatigue. That's all.

    Hermione

  • Hi Hermione, I can only speak for myself but I do struggle at at times with the UCTD diagnosis. I think the issue for me is that there does not seem to be a consistency with the diagnostic process with the rheumys. I too have had 6 ana positives now, malar rash (confirmed on photographs), photosensitivity (confirmed), ulcers (confirmed), polyarthritis, fatigue (under control now with placquenil), weakness proximally and distally (waxes and wanes), sacrolites (inflamation of this joint), 3 UTI's over the pat 6 months now (last one with white cell casts), fibromyalgia and regular flare ups, stiffness in legs, one positive raised CRP (last rheumy appointment). My rheumy is waiting for compliment bloods to change or ENA to be positive. I satisfy probably 6 of the 11 criteria but am still on UCTD diagnosis. I'm sure up and down the country there will be inconsistences with the diagnosis, It is not just for my own needs that a diagnosis is helpful but for those professionals who are helping us such as the physiotherapist, or other doctors that we see. I also note that certain medications are not suitable for people who have lupus (such as certain antibiotics should not be used).

    For me it will not change the condition it is more about recognising what we are going through, and it allows us to create awareness to other people. I know I have just had another 3/4 month period of being very unwell with one infection after another and really thought that this time at the rheumy appointment I would receive what I call a proper diagnosis. I understand that UCTD is no less significant but it is much more of a mouthful and more difficult to explain to people what is going on with you whereas Lupus UK has brilliant leaflets/bookmarks that we can give to people who don't understand the condition. I haven't seen any such information anywhere on UCTD . It all just sounds so wishy washy and more difficult to explain to people.

    I know what you mean when you say the liklihood is that we do have SLE and rheumys have to be 100% but it can be so frustrating. Like all of us I don't want either lupus or UCTD so would be happy if this all just disappeared and it was all just a bad dream.

    I guess whatever we have we will all have our own internal struggles with it. For me there is rarely a day at the moment when I don't wish that this 'condition' was recognised for what it actually is. xx

  • We do now have a Factsheet for Mixed Connective Tissue Disorder. It's a fairly new one. If you haven't seen it, you can take a look here - lupusuk.org.uk/images/pdf/l...

    We have physical copies that we can send out, so please let me know if you'd like one/some.

  • Hi Paul, thanks for this. I think you may have sent me this previously. This is certainly beneficial if you have MCTD. At the moment I have the label UCTD which is different in that they are unclear as to which CTD it is yet despite clearly having symptoms of lupus/myositis. A lot of people can be undifferetiated for a life time and it is this label that a lot of people struggle with as there does not seem to be any definite answers at all. I will try and ascertain at the next appointment whether rheumy does mean MCTD or UCTD. Thank you for your reply though, very kind:)

  • Hey I got a lupus diagnoses on just a positive ANA 1:320 homogenous and finely speckled...and inflammation about 11 on the crp test...and being tired, a little achey, sun sensitive, and sometimes muscle stuff...That could be my hypothyroidism...or post menopause stuff too...but the ANA is a little different. im also fair skinned person,..

  • So sorry to just have a rant - yep probably in limbo land for another 6 months:( Still I have a lovely family, others are far worse off than me so all's well in the world. Tomorrow's a new day as they say. Thanks for your support Sher xx

  • No problem mstr, rant away, it does absolute wonders sometimes ;0) u had some lovely words 4 me the other day when I was on a downer (as did many others) so the least I can 2 do is listen 2 some rants, I'm sure it'll b my turn again soon enough ;0) Keep fighting chick, u'll get there x

  • Thats how i feel mstr, My ruemy said i wouldnt recieve any different treatment than i already have ( hydroxy ) but it feels important to me , i hate all these questions flying around in my head . I am ok but i really thought i would have got a diagnosis this time so i know how you feel x

  • Hi Larissa, It's good to know that we understand each other on this forum. I have been reading a lot on the web tonight about UCTD to try and get my head around it. It is a real condition but they are just not sure which 'box' to slot us into as my rheumy says. It tends to say on the web that it can evolve into a fully fledged condition ie: lupus/RA/ myositis/scherderma or stay as UCTD it can go into remission. It seems that it often evolves in 3-5 years if it is to become a definte condition eg lupus/RA. It does say it is a milder course of illness .....though I have to say at the moment it does not feel like that. My daughter came to the appointment with me so she was able to confirm that the rheumy was saying that this is a diagnosis in itself and they need to keep monitoring it etc. In the meantime I am going to continue with the swimming, healthy eating and all I can to help myself in the hope that this will go into remission (I hope).

    I too Larissa would have liked a firm diagnosis just so that it confirms what we are going through. UCTD is such a mouthful so it's easier to say I have an autoimmune condition I think.

    Like you Larissa I have thought of so many questions I could have asked on the way home in the car from the appointment. I did take a detailed list of my ailments since August and shared this with the rheumy. But the time in there just flies by (20-25 minutes) before blood tests were taken.

    I wish I had been more specific and asked which features of UCTD were the most prominent at the moment and which CTD did he think were present. I don;t get it as I have a minimum of 6 seen and observed (possibly 7) of the ACR criteria for lupus and ANA 5 times but do not have the aDNA. Next time I plan to question, question and question.

    Larissa don't doubt you have a diagnosis as you do it is just not specific as yet. Thank goodness that we all understand what we are going through. It's been a long day so I'm going to turn in. Take Care x

  • Hey, it took me over 2 years before I was diagnosed, I had all the symptoms but not the butterfly rash on my face, my lupus blood test came back negative, even though it was clear I had Lupus. I had two operations on my lymph nodes (glands) in my neck and groin area both came back fine even though they were swollen and painful. I felt like I had two operations for nothing! In the end I didn't get diagnosed until I had a random itchy rash on my chest and I had a skin biopsy and the skin results came back that there was signs of an affected skin cell that could be lupus, so with this and the symptoms I finally got my diagnoses at age 20 :) So I didn't get my diagnoses through blood tests but though a skin biopsy so fingers crossed something works for you xx

  • Hi Shay1, Itchy skin on your chest. Lots of that for me. Autoimmune diseases and symptoms from a very young age. They have changed and morphed over time into other immune diseases. The most current is Sjogren's. SLE was noted in a high titer ana/ homogenous pattern. To date Rheum says I do not have SLE. Not certain what he thinks, although he prescribed low dose Plaquenil for intense sun/heat sensitivity and intermittent skin rashes.

    Not afraid to ask questions, I just think he's uninterested in anything but prescribing medicine.

    Thank you for your input. berrys4sal

  • I have the SLE type - the type that doesn't show but makes you feel sick all the time. Mine came on shortly after I took a live virus shot - Shingles. Until then, I was a picture of health. It can take a long time to diagnose Lupus. It sounds like you have the Discoid type, which is the milder one. SLE doesn't show but attacks internally. Constantly. With it, comes Scleroderma, Sjogren's, Raynaud's, etc. It's probably better - if you are going to have Lupus - have the Discoid type. That can be treated and is not as detrimental to your daily life as is SLE. I was 68 when I was diagnosed. 71 now and sick every day of my life. I know there won't be a cure or a real treatment in my lifetime, but for the younger people on this site - perhaps in yours.

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