Im really confused by info im receiving from my Rhuemy department. My Rhumey says I have Lupus but the rhuemy nurse disagrees and she questions my ANA results which is confusing me.
Basically the first time it was tested it was a homogeneous shape. It was tested again last June and was weakly positive and a speckled shape. What does this mean when it changes shape? Also is it possible to go positive to negative etc? Does the strength of the positive anti-body represent how bad the illness is? The nurse keeps saying its unlikely I have auto-immune type arthritis? This doesnt make sense to me. I have graves disease too so I do already have one auto-immune condition. Also all other bloods like inflammation and other anti-bodies are normal. Do other bloods need to be positive for it to be Lupus?
Im currently on plaquinel and azathrioprine which I have been on for about 10months and my joint pain has finally gone. I do keep getting symptoms though. I have gone 10months without mouth ulsers and now all of a sudden I have a mouth full of them and they are like blisters...really painful. Should medication totally get rid of all symptoms? I seem to always have one symptom or other but they come and go.
Hope this ramble makes sense.
Id appreciate any advice on things
Lulu xxx
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I really don't have any idea about the speckled/shape changing aspect of your question - so I am not even going to try.
However you can have a raised ANA without having lupus/other autoimmune disease, and it can also indicate that you do have one. Seems like a pretty rubbish test - except that I think it is the TYPE of anti-nuclear antibody that is raised that indicates what you have. Anti-dsDNA is indicative of lupus (especially anti-Ro, Anti-La, and anti-Sm). Other tests are more specific for lupus. I wrote an earlier explanatory post about ANA here: lupusuk.healthunlocked.com/...
I hope that is helpful. I am not a medical doctor so my knowledge if fairly rudimentary, but I hope it is clear.
As for the ulcers - they could be a flare or they could be a reaction to the azathioprine and a sign that your body can't cope with it. I think you should get them checked if you have not done already.
Hi Lulu, here is some information about the staining patterns:
Rim Pattern
Systemic Lupus Erythematosus (Most Specific)
Homogenous Pattern
Systemic Lupus Erythematosus (Very specific)
Further evaluation
Anti-dsDNA
Anti-ssDNA
Anti-Smith
Speckled Pattern
Most common, least specific
Disorders
Systemic Lupus Erythematosus
Mixed Connective Tissue Disease
Scleroderma
Sjogren's Syndrome
Further evaluation
Smith Antibody (Anti-Smith)
Ribonucleoprotein Antibody (Anti-RNP)
Scl-70 kD kinetochore (Anti-Topoisomerase I)
Anti-La (Anti-SSB)
Nucleolar Pattern
Disorders
Scleroderma
CREST syndrome
Further evaluation
Scl-70 kD kinetochore (Anti-Topoisomerase I)
PM-1
Diffuse Pattern
Non-specific pattern
Centromere Pattern
Seen in PSS with CREST syndrome
References
Gladman in Klippel (1997) Rheumatic Diseases p. 255-6
Peng in Ruddy (2001) Kelley's Rheumatology, p. 161-72
Callegari (1995) Postgrad Med, 97(4):65-74
Lane (2002) Am Fam Physician 65(6):1073-80
As with all these things it's best asking the health professionals about but at least it will give you a starting point with the discussion. I think it all takes time to evolve really. For example, I have lupus and polymyositis (mixed) but over time I am told one of them might become more prominent thant he other. At the moment it does seem to be days when lupus symptoms are worse and then others when the polymyositis is ......time will tell. Good luck with it all. Most important thing to do is ask questions. xx
Sorry to hear you are having such a confusing time. My first thought when I read your post was, is a rheumy nurse really in a position to question your diagnosis? Surely the rheumy is the only one who can decide on this.
I am not an expert on the various test for lupus. I do have some books from lupus UK which over the basics, but I have never come across a mention of the different patterns which the ANA test can produce. Mstr has covered this comprehensively, but it's all a bit beyond me.
I have seen it mentioned on here in previous post, that the ANA test can change when you are on meds. As presumably it dampens down the disease activity. But mouth ulcers can be a sign of a flare, so it would be a good idea to speak to your GP or rheumy advice line, if you have one.
Thanks for the replies. Im still abit confused lol ... This is my understanding of whats been said please say if im wrong...
A positive ANA doesnt really mean anything but it could mean the start of an auto-immune condition? Is it only if you have other anti-bodies present that they can say this anti-body indicates lupus or this one indicates another auto-immune condition?
Im worried because I have ALOT of symptoms of Lupus but not all the right bloods. Then I have had 3 doctors thinks its lupus and then nurse and another think its not.
Im trying to educate myself on whats needed to make a diagnosis so I can ask them why they think either it is or isnt. Its driving me mad not having a 'proper' diagnosis or finally getting one only for it to be questioned. Plus its worrying taking the drugs I am if its not lupus etc
A positive result for Anti-Nuclear Antibodies (ANA) is one abnormality, which when combined with others, points to lupus. You can find out more about the other 10 abnormalities here - lupusuk.org.uk/what-is-lupu...
You can read about Anti-Nuclear Antibodies in our factsheet on symptoms and diagnosis here - lupusuk.org.uk/want-to-know...
That Rheumy nurse needs to do some research, if she did she would see that argument is a bunch of rubbish. She also has no right to contradict the Dr and confuse you. I would speak to the Dr about this situation next time, as he deserves to know what the nurse is doing.
Good Luck :o)
Hi, just to address the last question re meds getting rid of your symptoms, I'm sorry to say that for most of us they don't, they just help either to reduce the symptom or stop it from getting worse. There is no cure fir lupus as yet, fingers crossed though. You and your consultant together need to decide if the benefit of the medication outways the side effects, for most of us again and the medics its all trial and error. You have to find what works for you but I wouldn't look to be totally symptom free, sorry.
To clear up your confusion & get you the best possible care, how about asking your GP for a referral to a lupus specialist? They are listed on the st Thomas' website. Unfortunately most rheumies seem to have only a basic understanding of lupus, & may not see that many patients with it either.
A friend from my local support group was diagnosed by Prof d'cruz & he did so from her symptoms not the blood results. These specialists know thier stuff & understand all the subtleties of lupus. Who would think one disease could effect us all so differently, no wonder it's confusing!
The consultant im under is listed as a specialist in my area as is the lupus nurse! I need to make a list of questions for my next visit and hopefully get all the confusion cleared up
Antinuclear antibodies (ANA) do not change size. Homogeneous and speckled refer to the pattern that shows up when they are exposed to immunofluorescent dye. A speckled pattern points to lupus.
The ANA test is a titer. This means the number represents how many times your blood had to be diluted to get a sample that is ANA free. Typically the numbers are 40, 80, 160, 329, 640, etc. While most people with lupus have a positive ANA 3 to 5 % can be negative. There is no definitive test for lupus.
It is possible to be symptom free, but from my experience most people have some symptoms even while on medication. I have been in remission for several years now and am symptom free. I continue to take plaquenil and Cellcept.
mouth ulcers ....I'm starting to think some NSAID can cause them at times, and also drugs from GP for joint pain..like: Diclofenac etc....BUT, I'm not even sure about anything anymore, cause I have mild lupus, I think...That's what they say....its like a cat and mouse game..
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Positive ANA. Getting Rheumatologist referral.
Ana now negative... Totally confused!
Lupus coagulant? Prednisolone? Confused and let down?
Feeling unlistened to. 
Three 'mild' positive Anti DsDNA tests, negative ANA, low C4.. Literally losing my hair! 
