I'm very new to this, so apologies in advance for being a bit clueless!
I had a blood test done for ANA back in the spring and it came back positive, as did some of the subsequent ENAs. I'm not absolutely sure why the blood tests were done, except that my FBC kept coming back with a very low WCC. Anyway, my GP referred me to rheumatology (having said that the blood results indicated lupus or "similar") and I've just got the appointment date through for next week.
I'm a bit thrown by this because, to be honest, I feel fine! Is it possible to have a positive ANA / ENA test without having lupus? Or is it possible to have lupus without any symptoms?
The only possible indicators I think I could have are enlarged lymph nodes (neck and groin) which have been flaring up since around this time last year (without ever really going away). I've also been finding it quite painful to pee and sometimes have a bit of blood in my urine, but it's never come up as an infection. But no rash, no tiredness, no photo sensitivity, no achy joints.
So I'm slightly at loss and not sure what to expect from the appointment or how to approach it. What sort of questions do they ask, and what do they usually do there?
Thank you in advance
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They’ll pretty much ask a lot, examine you, and take more blood tests. After my first appt I had the works: heart function, lung function nailfold capillary test and others maybe I can’t remember.
We’re all different, but It’s best to take notes in case you’re at a loss for answers. It’s possible to go brain blank when you’re not sure what to expect.
Thank you - that's really helpful! I wasn't sure if they'd be doing more bloods / physical examination or if it would just be questions. It's nicer to know what to expect
I was sent straight for a chest x-ray, which was quite frightening because I had no idea what lupus was, and an abdominal scan was ordered. The rheumy asked a list of questions about rashes, joint pain, fatigue, sun sensitivity, mouth/nose ulcers, hair loss, headaches and ordered some more blood tests. It was alarming because I had no idea what was going on, but you'll be better prepared! Write down any questions you have, because he/she might be out their chair without giving much explanation! Fair well! xxx
Eek, that does sound a bit full-on and scary! I can imagine it was a bit overwhelming. I just kind of feel like I am wasting their time by going. I find it weird to imagine that I could have something without having any of the classic symptoms. I don't even have any Sjogren's symptoms!
Best to have it checked out because things can chunter away without showing, plus autoimmunity - if that's what it is - can change rapidly so you're not wasting their time and if it turns out to be nothing, happy days! xxx
Just looked at the appointment letter again and it says that I'll need to go afterwards to the renal outpatients department... which I'm guessing must be something to do with kidneys? Is that usual for this kind of appointment?
It will just be to check out the blood in urine...your GP has been very thorough and exceptionally knowledgeable about the possible implications of ANA, which is unusual! I found it daunting because I'd never been to a hospital as a patient before, but just prepare for what you want to know as some doctors are very rushed! xxx
My GP is great - she has been really helpful and quick with all of this and was adamant that she would do the referral straight away (even though I was saying I didn't have any symptoms and perhaps we should just leave it for a bit!). She also told me that she did a stint on rheumatology as a junior doctor, so it's one of her "interests"... So yeah, I've got quite lucky, I would say!
Don’t know how it works where you go, but when I had to have a urinary trac t scan. Didn’t hurt,but had to drink 1.5 litres of water 45 minutes before the scan.
HANDY HINT.
I took my own water,the hospital water tasted foul.
I had a sip of it,it made me throw up.hope all goes well
Thanks - I've actually had that scan already, so I assume they won't do it again! And yes, I remember having to drink all that water... I was practically wetting myself by the time it was over!
I'm really pleased that some other members of the community have shared their personal experiences and given you some idea of what may happen at your appointment. If you would like any more tips on preparing for it, you may wish to read our article here - lupusuk.org.uk/getting-the-...
It is possible for ANA to be positive in someone with no health problems. In fact, it can be positive in around 10% of the population, so it isn't that uncommon but it will usually be more likely to be high in people with autoimmune problems.
The ENA panel includes various antibodies and I don't know how likely each of them are to be positive in someone without an underlying condition. Do you know what was positive in this panel?
Good luck with your appointment! Let us know how you get on and if you need anything.
No idea what any of that means, but my GP said that the Sm antibody is quite lupus specific. I did try to look it all up, but I couldn't really make head nor tail of it!
As we're not medically qualified I cannot interpret the results for you or suggest a possible diagnosis. Anti-Sm antibodies are quite specific in lupus and mixed connective tissue disease (MCTD). Anti-Ro antibodies that also appear to be positive can be found in lupus, MCTD and Sjogren's syndrome I believe. Our article about getting a diagnosis of lupus has some information about the blood tests which may be of interest - lupusuk.org.uk/getting-diag...
Thanks for the link. Yeah, my GP also said that the Anti-Sm antibodies are quite lupus/MCTD-specific. But I will just wait to see what the rheumatologist says, I think - also, these tests were a couple of months ago, so I don't know if it's possible that things change.
Yes, I probably was - since it was a pretty hot summer and I wasn't making any attempt to avoid the sun!
I had very swollen lymph nodes in my groin (multiple, on both sides) and neck (they went away more quickly). My GP was concerned enough about the groin ones that she sent me for a scan, which showed that there was no cause for concern. They have never really gone away since, but they aren't really painful or getting bigger, so I didn't really think about it.
Mayo Clinic, world-renowned teaching hospital in USA, says:
‘No one test can diagnose lupus. The combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis.’ Continue reading at the following site to see list of tests that may be done after interviewing you: mayoclinic.org/diseases-con....
It’s good, I think, to ask the rheumatologist what she or he has ruled in and what she or he has ruled out. Ask about the process of establishing a diagnosis. (They do it all day every day they are at work so it seems really natural to them but can be informative for you to say that you want to understand how this all works just as you did in your request here. By the way, good job advocating for yourself! Sometimes (um, OFTENTIMES) it will take a few to several appointments and various iterations of bloodwork, imaging and other evaluations to completely rule certain things out and certain things in.
If you’re in the very early stages of developing some medical issue, which is often the case when someone first has symptoms, you may not have enough symptoms to actually meet all the criteria for a diagnosis of anything. This stage could be quite frustrating because you have a desire to know what’s going on in your body but it’s just not possible yet. Sometimes people feel doctors are incompetent but doctors can only go on what you report and what your clinical presentation is, combine the two and come up with something if you actually meet the minimum criteria.
I do hope that is helpful. Keep asking questions and for support, especially in an understanding space like this. Most people’s experience is that they get sick for a little while, get some treatment, and get better. If you have an autoimmune issue your experience will be different; communicating with people who understand is a source of great comfort on this tough journey.
Thanks very much - that's really useful! To be honest, I won't be at all surprised if I come away without a diagnosis since I seem to have an absence of symptoms..! And the only symptoms I do have (pain when peeing and blood in urine + raised lymph nodes) don't seem to be very typical, and also aren't causing me any problems in daily life. We shall see..!
I was diagnosed years ago and I had no symptoms but high protein in my urine. They treated me with steroids and for 27 years I was very healthy there after. Then last October at 49, while still enjoying a healthy and pretty symptom free life I had a stroke that turns out to be related to my lupus, I had antiphosolipid antibodies at the time. Now I am again feeling symptom free and great. Some of us do not have the extreme joint pain, muscle aches and fatigue that others complain of but just have serious organ involvement. Your kidney symptoms and blood work indicate that you could possibly be in this group of lupus patients. Good luck with your journey.
I've also found (and sorry if this is tmi) that I need to go to the toilet a lot - like, I just feel the need to pass urine quite frequently and it's a bit painful, which was why I thought I had a uti (I didn't). I'm also waking up to go 2 or 3 times in the night, which never used to happen. Does it sound like something I should mention, or totally random and unrelated?
Yes you should mention those symptoms. Have you seen a urologist and had an ultrasound at all since it started happening? You should have your bladder checked along with your kidneys and test for diabetes as well. It is good you are being seen your renal health needs to be sorted out. I am very hopeful the cause is found and treatment is successful. Xo
I haven't seen a urologist, but I did have a test for diabetes (which was fine) and a pelvic ultrasound (they could see "a bit of inflammation", apparently, but didn't seem concerned). But it's good to know that it's worth mentioning, thank you! x
I am glad two big causes, gyn cancer and diabetes have been ruled out. Too be honest I do believe that you might find your path to diagnosis and treatment is quicker than others here seem to have experienced, especially if it is found you have organ involvement. You do have a very significant symptom at present, i.e. Blood in urine.
I was just at a regular yearly exam and failed the urine screen, the doctor noticed a butterfly rash that I thought was just normal flushing and ran blood test suspecting lupus and within a week my kidney disfunction was being resolved with steroids. It is harder to find answers when one has the multiple vague symptoms, like fatigue and non specific weakness but no seen organ involvement it seems. Good luck and I hope your kidney issues are resolved too.
Just a guess but the ANA may have been done based on your persistent low white count. Your ANA was positive, as were other more specific tests. There are no rules with autoimmune disease, but it is good they are ruling it out now. Early treatment is important even if you feel fine. You should ask the rheumatologist if it is possible to have certain tests like anti-DNA and anti-SM without having lupus. I think it is unlikely, though a positive ANA without having lupus is common. Complicated.
Thanks! Yes, I think the ANA was done because of the persistently low WCC (which was dropping lower every time I got it tested!). I can see that it's good to get it checked out, but I feel like a bit of a fraud because of the lack of symptoms. Admittedly there are the lymph nodes and poss renal symptoms, but it's nothing that I feel like is impacting on my daily life :/
Hardly a fraud. You say you do not have symptoms. You do have swollen lymph nodes and abnormal labs. It is impacting your life just to have to go through this. You would probably rather go out to play tennis than have see a rheumatologist. You are very brave.
Thank you for saying that. I don't feel strong - I feel a bit confused and freaked out, to be honest! But hopefully next week I will have a slightly clearer picture, one way or the other.
Thank you so much for the info and responses, I really am grateful!
When I was diagnosed moons ago, in the 90s, the symptoms doctors looked for to diagnose Lupus were not fatigue, pain, numbness or weakness that are frequently mentioned now, but they were looking to see if antibodies were attacking organs, specifically skin, lungs, heart and kidneys and often blood cells. You are showing serious symptoms leading to your body possibly attacking its own blood cells and a major organ, your kidneys.
You mentioned waking multiple times per night but never mentioned fatigue. You may just not notice the symptoms that others are impacted by due to a very high threshold of tolerance. Some are less sensitive to physical pain than others. You are are not a fraud you are strong but your tests and symptoms show the possibility that you may be in a very dangerous flare. You need to rule that out.
There could be something in that! I don't want to sound show-off-y, but I generally don't get very tired. For example, when I was at uni and up really late finishing an assignment, other people would be totally wiped out the next day and I would be irritatingly as fresh as a daisy I did wake up 5 times last night needing to go to the toilet (which was more than a bit irritating!), but I honestly can't say that I feel fatigued today at all :/
Hmm, and one more thought: I have been having some (very mild) back pain. Just under my ribs, on both sides. But I wouldn't think that could be a symptom :/
You should mention all symptoms. We all try to decide what is significant. But we can miss very important things! Doctors want to hear it from you, exactly as you experience it.
If you Google something, just say that Dr. Google told me this and ask his/her opinion. They know Google is a dreadful doctor - as are we - but at least we can give you our own experience. My experience is that honesty and asking questions is best.
I am on vacation with my cousin with classic lupus. When she suddenly had serious lupus symptoms and diagnosed fast, she realized she had been experiencing increasing fatigue and napping for a few months. Everyone is different.
Thank you so much for all the advice and experience-sharing. I really appreciate it! I was feeling so confused and, although I still don't really understand it, I feel like I can at least understand a bit better why I'm being referred!
I think I'm going to make a list of anything which I can think of, and that way I won't forget anything! The problem is that I really just feel like a bit of a fraud when none of these things have really been bothering me and I couldn't say that I've been feeling "unwell". My GP actually wanted to sign me off work (she thought I should be taking more rest) and I had to decline, since it seems like a total cheat to take time off when I'm not actually feeling ill!
I have Sjögren’s and have had blood in my pee for many years now. I’ve had everything checked and no cause has ever been found. It’s quite common for people in healthy population to have this idiopathically I was told by a urologist and is not necessarily a sign of organ involvement. Another possibility, especially as you are +Ro, is that it could be interstitial cystitis which is very much associated with Sjögren’s. IC feels like UTIs but isn’t and it also can cause trace blood in pee and also can relate to MCTD and Lupus I believe. Sjögren’s can also often lead to lymph gland swelling.
Thanks, that's useful to know! I had never heard of interstitial cystitis before... Mind you, quite a lot of these things I hadn't heard of until very recently! I feel like I have literally no Sjogren's symptoms (except the lymph nodes) but I guess there could be something I am not noticing...
As Paul explained above anti Ro is one of the more specific antibodies often relating to Sjögren’s. But you could have both Lupus and Sjögren’s or MCTD - including a degree of both plus others and this wouldn’t be an unusual combination or mix because there is often so much overlap between these sister diseases.
Sjögren’s doesn’t always present as dry eyes and mouth at first. If you are quite young then it may not show up fully until you are much older, whereas Lupus tends to show up most in younger people.
Best guess. Sjogrens (Ro) with lupus (Sm). With both together particularly Sm, there is also an increased chance of APS.
Many APS patients have symptoms after an infection as our bodies makes antibodies against bacteria that crossreact with molecules in our blood vessels. You may want to be tested for EBV antibodies as this can also trigger onset of lupus and causes benign lymphadenopathy. Ruling out a urinary infection is prudent as well if you have blood in your urine. Not saying walk around in a hazard suit or anything but just be wary of infections esp viral. Wash your hands....etc.
I am not a rheumatologist which would be the best person to interpret results but I do hope this helps quell any anxieties you may have. Hopefully things never evolve or if they do - at a snails pace.
Thank you! That's really helpful. (I'm an empirical researcher, so I like to gather information and understand things - it actually makes me feel less stressed, although I know that's not the same for everyone.)
I did have a check for UTI - a couple of times - and I never had one. I also checked the ANA titre on my test results and it was 1:320, which as far as I can understand is neither particularly low or high.
Anyway, we will see! And yeah, I do hope that if it does turn out to be something that it never evolves... I think I've come down with flu or something, I had a temperature last night and kept waking up drenched in sweat, and today I feel a bit yucky. I hope that it's not going to affect any of what happens at my appointment. Irritating, anyway!
Night sweats and flu like feeling - this could be lupus. If urine shows no infection and you’re ANA is moderately high, I’d say a renal ultrasound is in your future. Please keep us in the loop with how you’re doing! Your GP is very good to have picked up on this. He/she is a keeper!
Thank you so much and I will! You have all been so helpful and I feel a bit more relaxed having a slight understanding of the process and types of things they are looking for.
My GP is great (and really nice too, which is a bonus!). Today she actually called me up because one of my blood tests had come back very outside the normal range (eGFR - have no clue what that is!) and was quite insistent that I should pick up the form this afternoon and take it to the hospital so that the result would come back more quickly. So I'm now at the hospital feeling a tiny bit worried, but it is still very reassuring to know that I have a GP who is so knowledgeable and proactive! I'm lucky, I think!
Your kidney is made up of tons of little tubes that end in balls of highly concentrated blood vessels. These are golmerules. As your blood squeezes through these tiny balls, it filters out what’s needed and what isn’t to keep you from having too much or too little fluid. eGFR is another way of saying how fast can your kidneys filter blood. If less than 60, that’s not normal. I agree with your GP. You need to see a nephrologist (kidney doctor) as soon as you can. If you start swelling at all, I’d highly urge you go to a hospital.
A biopsy for lupus nephritis might also be suggested, I just want to warn you of this not because I am certain it will be needed but just so you do not panic and think they are looking for tumors if it is mentioned. Good luck and it sounds like you are in great hands!
Thank you both... I took the forms for repeating the tests to the hospital (so that I could do the and wait for the results, which was what my GP suggested) and the eGFR was again too low and Creatinine was too high (confusing), plus there was protein and blood in my urine, so they have kept me in and at the moment I'm waiting to find out what is going to happen :/
Thank you for the warning about the biopsy, Roarah, I think I am now less likely to freak out if it is suggested!
Creatinine gets filtered by kidneys. It’s a constant in all of us. When your kidneys don’t filter, creatinine builds up in your body. Thus high creatinine, low GFR. I guarantee they’ll want a biopsy. Hang in there! I’m so glad they caught it early. This gets missed a lot. God bless and good luck! We are here for you.
You are in the right place. Stay calm and trust it will be ok. I know how hard it is but you are on the road to getting better. You are strong and you have doctors looking into what is going on and how to help you. It is scary but it seems your doctor is on top of it and soon they will figure out a course of treatment to get you on the road to recovery! thinking of you! Hang in there you got this!
Thank you for all the support... it really helps a lot! My husband is a bit terrified by the fact that his 28 y/o wife has suddenly been whisked into hospital without any warning, and I haven't even dared to tell the rest of my family what has been going on yet! So it is nice to feel that people understand...
As you've predicted, I'm having an U/S and biopsy and they're also concerned about my WCC because the neutrophil count is 0.5 (which is apparently very low). The doctor I spoke to said that this basically has all the hallmarks of a lupus flare and apparently the fact that I've been a bit feverish and achey today makes it more likely. Anyway, we shall see. I guess I just feel very very lucky that this has been caught at all, it seems weird to think that something like this could be going on when I have basically been feeling perfectly well!
I was a tad younger than you when I had my kidneys affected by lupus. That was 27 years ago and I was really well in those years following my kidney involvement. I was so healthy I was even deemed able enough to donate my bone marrow which is not always permitted. I had a very easy first pregnancy and have had a very happy and healthy life over all and I am hopeful for another long flare free run. Once they sort your kidney function out and get you properly set with medicines you to will be here in 30 years giving advice to a young lady experiencing her first lupus flare! Hang in there, take it easy and allow yourself to heal for now.
So good to read all these positive comments - I'm trying to stay feeling positive and I think the main thing to focus on is that I'm in the right place and I am very fortunate that this was picked up. I'm keeping an open mind, since I guess it still might not be lupus, but they seem to feel that is the most likely scenario and I'm going to be seen by somebody more specialised today, apparently. It's also nice of you to tell me about your straightforward first pregnancy Roarah, since that's one of the things I've been worrying about in the back of my mind since this all began... My husband and I were planning to start trying for our first child very soon, but I feel like we may have to put that on hold for a little while...
I saw a consultant rheumatologist this morning and he was absolutely fantastic; asked me lots of questions about what I'd been experiencing and explained everything very thoroughly. I am having some further blood tests, but he said he is 99% confident (based on the lab results so far, the U/S and the symptoms I'm experiencing) in diagnosing this as lupus nephritis and I am probably experiencing a "flare". It's apparently a bit unusual that I don't have high blood pressure or any swelling, but I'm skinny and my blood pressure is usually really low!
The plan seems to be that they are going to start corticosteroid treatment (which sounds a bit scary to me, to be honest). I'm very, very achey today and I've got pains running up and down my arms and legs (it feels like I've been in a fight!) and they keep trying to persuade me to have some pain relief, but apparently NSAIDs are out and the medication they would give me would likely make me very drowsy, so I keep saying no! I want to be awake enough to understand what's going on, especially since my husband had to go to work today and I want to be able to explain everything properly to him later!
I was on steroids for around six months then tapered off and have been trouble free kidney wise ever since. I will not lie, I hated being on steroids but it was so much better than the alternative. Take meds but ask a nurse for a pen and paper so you can take notes when they give you information. Xo
That's a really good idea, thank you! I feel a bit overwhelmed with information :/ I'm feeling a bit guilty as well because this couldn't be happening at a worse time. My team are supposed to be doing data collection all weekend at a research event and (obviously) I'm not there today for the set-up. My line manager is Not Happy and is pelting me with emails!! Will I be able to come this evening? No? What about tomorrow then? Not even tomorrow afternoon? Etc. Well, at least it's a distraction
I think your manager is the one who should feel guilty. You need support during this time, not expectations of performing on the job as you could last week. Does she fully understand what is happening and that your doctor recommended that you take off from work?
Haha, my line manager doesn't really believe in people being unwell, so it was pretty much the reaction I was expecting! I'm still in hospital, but my husband says that this is probably the coolest place in the whole of London today, so I am taking the positives. I did eventually agree to have the pain relief medication, but I seem to have adjusted to it today and I just feel mildly spaced-out!
That sounds like a hard person to have as a manager right now. Sounds like you have a supportive husband and doctors who are doing all the right things. Glad the pain medication is working and you are staying cool. No sun, you know!
I have not suffered lupus sun effects but have sun damage and early skin cancer so I wear protection and hats but still sail, swim and beach all summer long and do ok. Our pool is shaded after 3 pm so that is when I now usually swim. I enjoy the beach earlier or later in the day and I use a sun awning in the cockpit of our boat. I trust you too will be able to find a balance between loving the sun and protecting your health too. I do think talking about vitamin d supplements with your doctor is important for lupus patients aswell. Xo
That's really encouraging, thank you! I am a bit of a sun worshipper and am lucky in having very olive skin that tans rather than burning, so it is nice to know that one can still enjoy warm weather with some adjustments
I'm feeling a bit fed up this afternoon. I've suddenly got a very upset tummy and (sorry, this is a bit embarrassing) I keep having to go to the toilet. I would much rather be in the privacy of my own home than in hospital with everyone seeing I know they have seen it all before but it's just a bit humiliating!
Sorry, just feeling like I need to moan a bit... and they are looking after me so well here that I don't feel like I should complain about anything! And I know my husband is quite shaken up by all this, so I don't want him to worry that I'm not coping, so I'm trying to keep a very positive face on!
That is so interesting about the cross-reacting antibodies. Would that mean that you would expect to see positive anti-phospholipid antibodies in the future?
Possible after infection. Called the double hit hypothesis. With one bad infection, you get symptoms which primes your body to store memory of antibodies. Subsequent bacterial infections can have dire consequences if systemic like in bacteremia. This can causes an array of problems which we call catastrophic APLS. We don’t know much about what antiphospholipid antibodies are made for certain bacteria or infections but the crosslink is well founded. November may or may not have antibodies but I wouldn’t go searching unless I planned to treat aka blood clot, stroke, heart attack.
I am a first generation college graduate with a working class family. Earned my MD/PhD somehow. I get it. Just a little help...not in a know it all way.
Systemic - whole body
Bacteremia - bacteria growing in the blood stream
Antibodies - sticky proteins that mark foreign things in your body so your cells can eat the up
Catastrophic APLS - clot shower in setting of lupus with aPL that can affect any organ
Sounds like what may have happened to Roarah — stable lupus for many years and then a very serious event. You might be interested to know that when I was young and ANA negative, my doctor sent my blood to a lab at Cornell (maybe Michael Lockshin’s lab, colleague of Graham Hughes) for testing. There were no standardized tests for these antibodies back then. Things advance!
I had acute shingles in October when I had my stroke, this is what my second hit might have been. I also had just flown so I might have had a trifecta of hits I only had the antibody testing as a result of my stroke.
I had very quick treatment and got TPA within an hour of my stroke. My sister in law's knowledge of the symptoms of stroke saved my life. FAST ( face: droop, numbness; Arm: unilateral numbness paralysis; Speech: slurred, confused or garbled: Time: call 911 in USA or 999 in uk. )
This is an amazing turn around. I am so glad things turned out okay for you and you didn’t wait. It’s sad to hear people doubt themselves with these illnesses and wait too long. 👏👏👏
The response team had scans in the ambulance to rule out hemorrhage as the cause of my stroke and the TPA was administered before I arrived at the stroke center! It is sad this technology is not everywhere yet
We have the same - I learned it in first aid training at work! It's good that you were treated quickly and well, but it must have been frightening all the same.
One thing that has come of this thought-provoking post, Wendy, is that patients do need to be vigilant, particularly if they are aPL positive for any signs of DVT or stroke. I have been told not to try to figure out if it is a migraine or something else for certain symptoms. Call 911, not the doctor. There is a lot they can do. Get instructions from your doctor. Make sure you know the signs of a stroke.
This is not to scare anyone, simply what everyone should know.
Glad your appointment went well and that the doctor was able to answer questions. You are having to take in a lot at a fast pace. Can certainly understand your concern about the steroids. Hope you will be like Roarah and others who were brought into remission with nephritis fast.
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I did wake up 5 times last night needing to go to the toilet (which was more than a bit irritating!), but I honestly can't say that I feel fatigued today at all :/
I know they have seen it all before but it's just a bit humiliating! 
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