ANA, ENA & dsDNA Lupus?

[Handsup]

I had the following blood tests above recommended by my GP which I assume is to look for Lupus or anything else auto immune, meanwhile I was wondering if I need to be in a middle of a flare for these results to come back high/positive in order to get a diagnosis?
Am I making sense?

[BigPigLittlePig]

No, they can be positive even in the absence of symptoms

[Handsup]

Thanks littlepig

[Lonecatwithkitten]

They can be positive without symptoms. However, you can have the disease and have negative tests at various times. I have mixed connective tissues disease and sometimes my ANA is positive and sometimes it's negative it really depends on how well controlled I am at the time and if I am having a flare.

[Handsup]

kitten this was my concern after learning the Ana doesn't always come up positive despite having Lupus etc. The day I had my blood tests I was having a good week - no pain, full of energy (highly unusual) yet today I'm in full old lady mode. Results back sometime next week.
How was it for you getting a diagnosis? Did it take time or were you a straight forward case?

[Lonecatwithkitten]

Mixed connective tissue disease is one of the ones that will not be diagnosed by a GP only a rheumatologist, but belongs to the same 'family' of diseases as Lupus.
I have a huge family history of immune mediated disease and fortunately my GP used to work on the rheumatology team so even though my results were ambiguous she referred me. 6 years ago my rheumatologist was happy with a diagnosis of mixed connective tissue disease, he now feels I have the features of several of the disease from this group my bloods and symptoms don't totally fit any category. Fortunately he says he doesn't care about the label he is just going to treat me.
I am lucky my private healthcare covers me, but he sees lots of private patients who just pay for their consults and he runs all the bloods etc through the GP. So if you don't meet the NHS criteria for referral it maybe worth paying for a private consult.

[Handsup]

Thanks for the information. I already have ankylosing spondylitis & my mother MS - so quite a mixture of auto immune infliction already but I know there's more going on then the already diagnosed.
I've been referred back to a rheumatologist so we'll go from there I guess.

[LostInWales]

Hey Handsup, I have ankylosing spondylitis (well axial spondyloarthropathy which is the same thing new name). I have now also developed peripheral spondyloarthropathy, ie the inflammatory process has spread from my spine to my shoulders/elbows/hands/wrists/ankles/feet. I shuffle like an old lady most of the time, feel exhausted and have symptoms not just from my joints too (high BP from damage to the vessels around my kidneys, I think, not always full explanations forthcoming). I think my rheumy goes an awful lot on symptoms and inflammation not only the blood tests because they are a bit hit and miss. He has quizzed me about a lot of the lupus symptoms too but seems to have settled with the above for now. Do you take any medicines for the AS? Sorry as well, it's a bit shit isn't it, this business?

[Cocolepew]

I have Lupus and my blood tests are always negative, I got diagnosed by symptons.

[Handsup]

Hi Wales it's totally crap isn't it?! I got my spondy diagnosis via a bout of iritis, positive HLA B27 and painful joints. I was originally just taking neurofen and have just graduated to meloxicam - I was offered mex..something? but the potential side effects scare me however the fatigue is awful.
Is your high Bp a result of meds or your condition?
I've also have flares of tiny itchy hives, and little vessels that look like they've burst along with muscle spacity\ringing ear - seems rather unrelated to spondylitis hence looking into lupus.
Coco I've read many have been diagnosed by symptoms alone.
There's something very isolating about having an auto immune condition as many people are unfamiliar so you don't get much on the sympathy front

[Handsup]

Sorry Wales, just read Bp from kidneys.

[LostInWales]

Yeah the whole meds with atrocious side effects vs stupid disease with atrocious side effects business is a bastard! I'll post more in the morning, it would be nice to chat to someone else who is stuffed with this too. I'm only awake because I have a shitty cold, again, because the meds I take lower my immune system and I can't fight it off very well at the moment. I stood there this evening with my sinuses stuffed so full my eyes watered with a fist of drugs that lower my immune system and laughed that I would still take them even though they'll make shifting the cold even harder! I think a sense of humor is the best weapon. See you in the morning.

[squirrel996]

my bloods came back ana positive and still nothing was mentioned about lupus or anything else! Just that it was autoimmune.

[Handsup]

squirrel did you have the blood tests because you showed actual symptoms?
Yes wales, be nice to speak to a fellow shuffler. Night.

[hashtagwhatever]

Hi,
I'm currently under rhuetology positive ana a whole range of symptoms and ultrasounds have shown inflammation in my joints. Due to see rhuetology next month so hopefully will get some sort of diagnosis. I think the worst thing is not knowing, do you agree?

[Lonecatwithkitten]

Lost I can sympathise with you one of my least favourite symptoms is producing no mucus. So when I catch every cold going due to the immunosuppressive drugs I get terrible sinus pain because I don't produce any mucus just really inflamed sinuses that feel like my head might explode.
Can I ask who has the flu jab I have just entered my GP's criteria for the flu jab and I am in two minds about.

[Cocolepew]

I had the flu jab last year for the first time. I didnt get the flu, but haven't had it for years anyway! I also got the pneumonia jab, I think that is every 10 years.

[LostInWales]

I'm going to have the flu jab again, don't know about pneumonia, I know we can end up with damage to our lungs from the disease so this might be a good idea. I'll ask the nurse when I go for my BP check up in a week or so. I swear the amount of time I spend in waiting rooms for GPs and consultants and nurses and blood tests. It's not normal for 40!

Anyway, I've had this stupid thing since I was a teenager but it's really ramped up in the last two years. I've got some lovely bridging spurs in my thoracic spine and damage visible on x-ray to every vertebra in my back, SI joints hurt like bastards and inflammatory change visible on a bone scan in every joint in my body but my hips but joy of joys my blue badge finally arrived last week, just need to get up courage to use it now! I'm also 'sero-negative' so diagnosed from physical symptoms and scans rather than blood tests. I've given armfuls of the stuff over the years and apart from occasional markers for inflammation they come back normal every time.

How are all you other lovely shuffly people this morning?

[Handsup]

I've just dropped and smashed my iphone screen so can't see what I'm writing
Not to shuffly today Wales. Hope your cold is easing up? You sound like you've had a rotten time.
What lovely/evil meds are you taking for your spondylitis?
It's no fun feeling like an old girl at the tender age of 40 is it? I'm 38 (apparently look well) but by god I wake up daily feeling like I've been whacked by a baseball bat, tortured, burnt yet my family (including dog) expect me to do a Mary Poppins every morning.
With regards to your Blue badge enjoy it - my mother has one (MS) & said it's seriously liberated her quite a bit. She's 57 and still working full time.
I wanted to ask with regards to your kidneys did the inflammation show up in your blood results?
Have a couple of other questions but at ds football match, unable to concentrate - speak soon.

[LostInWales]

Lonecat the whole dry sinusitis sounds grim beyond belief! Urgh!

My kidneys look fine on blood tests but my BP went up about a year ago and after repeated tests my rheumy wrote to my GP and asked her to sort it so I had a 24 hour monitor which had me immediately placed on ACE inhibitors, my prescription list is becoming more like and epic novel . I've had the thoracic pain for over 25 years now and it showed up on x-ray about 15 years ago, the inflammatory pain comes before any permanent damage. I'm guessing the drug 'mex' something is methotrexate which lowers the immune system, when you get back to the rheumatologist again I'd suggest you look at it more seriously, I know the side effects are crap but if it works for you it can stop your pain becoming permanent like mine has. I didn't make a fuss, just ploughed on working and looking after my growing brood of children until 2 years ago when the physio I was seeing said he wouldn't see me any more until I had things better sorted out. Hence bone scan showing lots of problems and finally getting to rheumatology. I currently take (as well as the ACE inhibitor, morphine patch topped up with tramadol tablets, omeprazole because I treated myself with ibuprofen until I broke my stomach

[Handsup]

Yes lost methotrexate was the med offered - I can no longer take neurofen due to trouble with stomach lining. No doubt I'll be graduating to the hard core meds very soon because feeling like this is no longer sustainable. Probably damage is being done too because new and different joints are clicking constantly.
Just wanted to mention Sinurinse by Neilmed is fab for preventing colds. I had dodgy sinuses for years, on countless nasal steroids but it's been years since I last had a sinus infection since using the nasal wash. If your prone to colds and stuff I would definitely look into it.

[Handsup]

Yes lost methotrexate was the med offered - I can no longer take neurofen due to trouble with stomach lining. No doubt I'll be graduating to the hard core meds very soon because feeling like this is no longer sustainable. Probably damage is being done too because new and different joints are clicking constantly.
Just wanted to mention Sinurinse by Neilmed is fab for preventing colds. I had dodgy sinuses for years, on countless nasal steroids but it's been years since I last had a sinus infection since using the nasal wash. If your prone to colds and stuff I would definitely look into it.

[LostInWales]

You might be ok yet you know, it can take years and years for damage to be visible on x-ray and even then if you can get the oveall inflammation down you would see a lot of difference in the pain levels. I first went to the GP when I was 16, x-ray at 22 showed nothing (even going back to it now, I can't see anything obvious when I know exactly where to look, not that I have my old x-rays stolen from work when I left at all, oh no, that would be bad). The first x-ray where it was visible was at 27, by that point I was experiencing pain that affected my day to day life significantly. There's still lots of hope!

[LostInWales]

Have you tried taking paracetamol on a constant basis if you have bad pain, you can get considerable benefit from taking them at regular intervals constantly rather than waiting for the pain. Sorry if I'm teaching you to suck eggs.