Lupus in my future?

[trost]

ANA of 1:1280 (homogenous and speckled) and Anti ds DNA of 65 IU. Docs/lab saying the 65 indicates a negative for the anti ds DNA test, that it has to be over 100. Most things I've read are to the contrary. She has now diagnosed me with chronic fatigue and fibromyalgia. Any thoughts or help?

[PMRpro]

Being of a very sceptical nature - I tend to class dx's of CFS and fibro as "I don't really know and since I can't do anything about either of these you can go away and leave me alone".

Out of interest - do you know what your ESR and CRP markers are?

[trost in reply to PMRpro]

I too am skeptical and agree with the I don’t know/go away mindset. My CRP shifts but always out of range high; sometimes just out of range in a 7-10 to much higher. My ESR only tested once and normal. Did have slightly high GFR(not sure if that relevant to this convo).

[PMRpro in reply to trost]

If your CRP is high it suggests inflammation - which isn't the case in fibro at least. The CRP may be raised in CFS - but there seem to be different versions of it.

I'd be wanting another opinion. Maybe from a CFS/ME expert - and there are specialist centres for it these days.

[eekt]

Hi there! Have you had a look at the lupus BSR Guideline? It's the only NICE-accredited guidance for the diagnosis and treatment of lupus (SLE) in the UK. This page might be helpful: academic.oup.com/rheumatolo.... Keep us posted! xxx

[Fennella02]

Whether or not your anti DSDNA is negative, it is still perfectly possible for you to have an auto immune condition which may or may not be Lupus or Lupus-like. Not everyone fits into convenient tick-boxes. Persist with getting a better diagnosis as PMRPRO suggests.

[Buffy14]

I was told that antidsdna over 9 is positive so 65 is definitely positive , who gave you this diagnosis was it a consultant or just a gp ?

[trost in reply to Buffy14]

The tests were ran by a rheum. The range on the blood work doesn’t indicate positive unless it’s goes over 100. I am also in the US

[Buffy14 in reply to trost]

It must be tested in a different way in the us then I think there are different ways to check it . Mine was 120 when I was first diagnosed , it has gone up and down over the years it was 29 at my last check up , I asked my renal consultant what figure is negative and he said 9 and below , when I was diagnosed the doctor at the time said a normal healthy person has about 7 antidsdna in their blood . Maybe you could ask what your result of 65 equates to if checked by the other method that some labs use x

[HedgeEnd]

I've just looked at my last lot of bloods and it says the 'normal' range for anti-dsDNA is 0.0-20.0 so 65 would appear to me to be positive, but it may depend on the lab used. Have you got a print off of your results? If not, ask your GP for one as it should say on there. My anti-dsDNA is negative, but they are still in the process of diagnosing me for possible MCTD or mild lupus as I have a positive ENA panel. However, was told it was fibro 5 years ago too! Also, my mother was diagnosed with fibro years ago and my older brother with CFS, and I totally agree with the skepticism of PMRpro.

[trost in reply to HedgeEnd]

I have a print off of the results. Are you in the UK or US? It’s baggaling how any two ranges could be so wide.

[HedgeEnd in reply to trost]

I'm in the UK and it's not helpful that they differ. It would make more sense for it all to be the same. I assume it must be like cm and inches!

[Kangamum]

You need a second opinion. You Al. Ost certainly have lupus, assuming your symptoms also fit. Your Ana is very high, which doesn't fit fibro or cfs. Mine is also that high with uctd/lupus. My antidsdna is negative but I have a positive anti ro, hence the uctd/lupus. You antidsdna is positive. And I would demand to see a different rheumatologist. I had to see 7 to finally be taken seriously.

[trost in reply to Kangamum]

She explained away my ANA being high due to family history. My mom has multiple AI diseases; including lupus.

[Kangamum in reply to trost]

Well a family history of autoimmune, means you are more likely to have an Autoimmune. It doesn't mean you re more likely to have a very high positive Ana. One of my rheumys told me my very high positive Ana meant nothing, because lots of people have a positive Ana. I did my own research and found, yes, you could have a positive Ana with no disease, but almost always its 1:60 or less. Not 1:1280, which by the way is usually the upper limit of how much they will titrate by. They stop at that point. Which means it's usually much higher. What are you symptoms? Have you looked at the criteria? You have to keep fighting. They ignored my years of symptoms and ana, and my baby was born prematurely and died some days later. Only when my anti ro came back positive did they then listen. And the only way I found out was because I know someone who works in the NHS and they told me. My rheumy told me it was negative. I had to kick up a huge fuss to actually find out the truth, that my anti ro was positive. And it was dangerous in pregnancy as it damages the heart. I was pregnant at the time and they still told me it was negative when it wasn't. Be your own advocate.

[Fennella02]

I’m wondering if the unit of measure is different and your 65 is actually 6.5?

[trost in reply to Fennella02]

The printout says 65 IU.

[trost in reply to trost]

What units was yours measured?

[Fennella02 in reply to trost]

When I looked online it says borderline positive. Mine came back as 6 which I was told was 'equivocal' but I wasn't given a UoM. I consider myself to be sero neg and always have been.

[Bacardibabe76]

You can have negative dsdna and have lupus. Did any other antibodies come back positive?

L 😀

[trost in reply to Bacardibabe76]

I had high positive parvo b19 (not current)

[Chanpreet_Walia LUPUS UK]

Hi trost,

Fibromyalgia can be commonly diagnosed during early stages of lupus. The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions: fmauk.org/

To find out the specific criteria and tests that are needed in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...

[shareasmile]

Count me skeptical like PMRpro! I get very frustrated with the fall back of fibro! Similar thing happened to me! Please, please seek a second opinion. Some rheumies are simply lazy and don't want to deal with results that are not clear--although yours seem much clearer than some. You must be vigilant!

[shareasmile]

Also, do you get migraines? Have abnormal anxiety/depression? Irritable bowel? TMJ? Interstitial Cystitis? Multiple sensitive pressure points? My previous rheumy tried to say I have all of these conditions in order to support a fibro diagnosis. All bogus. Get your medical records to see what is documented.