Hi everyone, I am just wondering in what way people got diagnosed with Lupus on here? I have nearly every symptom, and have done for nearly three years- with increasing severity as time has gone on. I have recently changed GP surgery as my old Dr was putting all my extra symptoms down to the fibromyalgia I have had for 8 years. The pain I am now suffering with is so different to the pain I have always suffered either from fibro. My new GP tested for Lupus via blood and said my ANCA? Test was positive for lupus but a further antibody test came back negative, so is again querying my fibro. I have the butterfly rash, dry eyes & mouth, mouth ulcers, blurry vision, severe joint pain in ankles and fingers, - which are symptoms I have never had with fibro. Are there any other tests I can request because honestly some days I feel so ill I feel like I am on my way out! Thank you 😊
Confusing antibody test results: Hi everyone, I am... - LUPUS UK
Confusing antibody test results
Hello! Sorry to hear you've been having all those horrible symptoms its not easy, especially when they havent give you a definitive diagnosis. It can be super frustrating and stressful so I hope you are coping okay. Sounds like lupus though!
I was diagnosed a couple of weeks ago. The first symptoms i noticed were extreme extreme fatigue and i had really terrible joint pains in my hands and feet over summer. I thought the fatigue was anaemia related so I did a blood test and they incidentally found my platelets to be dangerously low. They then diagnosed me with ITP which is immune thrombocytopenia (the low platelets) and did some more tests. My ANA and dsDNA antibody tests came back as really high (maybe these are the same antibody tests they have done for you - if not these are the standard ones they check first) and my complement levels (C3/4 tests) were low. Some other antibodies were positive as well but not all of them were. They also did an antiphospholipid test, lupus anticoagulase test, crithyndia dna test (ive defo spelt that one wrong) and some others which I cant remember Im sorry - they did drain my blood, one time they took 16 bottles of blood from me😭😭 I think with lupus not all antibody tests have to be positive and just because some are/aren't positive doesn't rule out lupus if that makes sense. dsDNA test (has your doctor mentioned that one?) is usually the most indicative test i think. At the time I was having all these tests, I was (and am) losing my hair, having the joint swellings and pain, dry eyes and mouth and the fatigue which can be debilitating.
Your symptoms do seem to line up with lupus, have you spoken with a rheumatologist? Again I am so sorry youve been going through this, especially for such a long time. Having just been diagnosed, I know how scary and painful it is - but you aren't alone which is something I am learning since the diagnosis. We are in this together! Hope this helps and sending lots of love xxx
Awww thank you so much for replying. Bless you, you sound as if you have been in the wars too, I bet you are relieved though to have a diagnosis and hopefully treatment is working or will start to work for you soon?
As for all the antibody tests you describe - I have no idea which ones apart from the ANA one have been completed on me. I have to go for a blood test tomorrow but this is just for ESR. I have to go to hospital to have my blood taken as my veins don’t play ball, and it is like a military operation to even get one vial from me - needless to say I am dreading tomorrow and the pain that will follow from the needles 😱.
I have a telephone appointment with the GP next Wednesday so I will be sure to ask for the specific tests that have already been done, and ask for further ones like the ones you desrcribe. At my last appointments my GP said she was going to write (email?) a rheumatologist to ask advice on what to do with me. My last appointment was basically all about the awful pain I have in my foot, and trying to find a reason for it. X-rays were clear so it has to be something not bone related?
It is good to have this forum to speak to others, particularly in relation to how difficult it is to even be seen face to face by a dr these days and not being able to have timely diagnoses and advice given.
I have a problem giving blood as well, make sure you drink loads before you go and keep really warm. I carry those hand warmers. When I went through chemo, I was told to drink as it plumps up the veins. They also tried this plastic sleeve on me and it blew hot air on my arm for a few minutes, bingo! Simple machine but it plumped up the veins, before they got this machine I had to sit my arm in a basin of hot water. Small veins 🙄. Good luck, I hope they manage it, I feel your pain.
Oh nooo good luck with the blood tests hope it goes fine. Thank you, I have just started treatment, doesn't seem to be working much at the moment but i know it takes a while to kick in. This is also a good resource to see if your symptoms line up: uptodate.com/contents/image... Doctors should really be using this as a guideline because as many people have also said, it isnt just about the blood results - they need a whole clinical picture. It does have to be diagnosed by a rhemutologist though. Just a warning though, the wait list on the NHS is very long so if you can afford it, sometimes better to go private. But it is so wrong that people feel the need to have to go in that direction as it is very expensive for such an important condition that should be treated as urgent under NHS if you have no treatment. My 'urgent' referral wasnt until March (this was around October) and my symptoms were deteriorating really quickly so I saw a private rheumatologist who diagnosed me and prescribed me the meds i needed - he was very kind and put me through to the NHS system. Sometimes going private is not an option which I understand so see what your GP says and ask them to refer you, not just ask for advice as this is clearly an immunological problem you are facing!
You need to ask to see a Lupus specialist. GPs are not trained in one subject but a little of everything.
I was treated for three years by my GP, he was certain that it was not Lupus, even told me the only place that I could be seen was in London.
I contacted Lupus UK who gave me the name of a specialist in Birmingham, and after demanding to see her my GP referred me.
On the day of my appointment with her I was immediately admitted as she thought I had had a stroke. as I now couldn't walk. I hadn't eaten for two weeks and my reflexes were zero. It turned out to be Lupus affecting my brain. It took them two weeks to confirm the diagnoses and on returning to my GP in the weeks following he admitted he knew very little about Lupus. A locum ,a month later, informed me it was all in my mind and did I want psychiatric help!
My specialist ( a Lupus professor)is amazing, and I owe her my life as without her intervention I would have died. Please aske for a referral to a specialist reumatologist
Hi Marzipan, welcome! Searching for diagnosis is rough because lupus symptoms overlap with so many other things. When my rheumy does bloods, he typically checks the antibodies (ANAs), anticardiolipins and antiphospholipids, ESR and CRP (inflammation markers), and C3/C4 complements - my C4 is usually low which typically indicates a lupus flare. They usually test for the other stock standards: FBC, LFT, thyroid, iron, B12, kidney markers as well.
As Nada pointed out, negative bloods doesn’t mean you DON’T have lupus; positive bloods are merely a confirmation that lupus is more likely. I was diagnosed after an 8-year search and after everything else was eliminated. I have mouth ulcers and joint pain like you, positive blood markers including anticardiolipins, fatigue and brain fog, and a host of rashes and sores, plus a previous episode of pericarditis. With the dry eyes and mouth you are experiencing, could it be Sjogren's? Don’t know if you’re looking for differential diagnoses, it’s just that dryness can be its own specific disorder! Good luck, and feel free to post here anytime. We know what a pain in the proverbial the search for diagnosis can be. 🌻✨
Hey I hope you get this figured out. The journey is so frustrating.
I am DX'd with Lupus but my ENA (the cascade side panels) never were specific for Lupus. But my ANA was 1:640, my side panels that were positive or equivocal were for Thyroid, AntiCCP (Rheumatoid), and Centromere B (CREST), but none on the exact Lupus side panels. But with my symptoms and all the other parts he literally said "I can see something of the spectrum of Autoimmune Disease is happening and it involves a few diseases but I see this as the starting of Lupus by criteria and definition so we will treat it as Lupus so it doesn't progress." He started me on Lupus meds and treatment which hopefully helps all the other stuff I have going on. My liver recently also started getting weird numbers which can be from the Lupus. So I hope you find a Rheumatologist that DOESNT rely on only numbers as they SHOULD rely on criteria and for Lupus for instance you dont HAVE to have ANY blood numbers if the symptoms and ANA is positive! You only need ANA of 1:80 plus 10 points and above of certain symptom criteria for them to see it as Lupus. But there is a lot of overlap with Fibro and other AI Diseases so a good Rheum can also differentiate. So just be certain they are taking it seriously and following the right formulas. Some Doctors are very outdated and some are very stubborn, they are humans too. Blood tests as MusicalFurbaby said; are only part of the puzzle. There are so many elements a good Rheumatologist has to look at! I for one had Malar Rash, Rashes, Swollen joints, painful joints, mouth and nose ulcers, and blood work that revealed Antibodies to things. Each time I go back they find different numbers elsewhere or such but it changes and is dynamic. Every doctor visit for you things will change! I hope the best for you and best of luck!
Hi, have they mentioned Sjogrens Syndrome too? I have Lupus and Sjogrens (several autoimmune conditions can pop up together, they seem to like company! 😀). All bloods negative ro/la etc.. except positive DSDNA. My Rheumatologist diagnosed from symptoms for Sjogrens (very dry mouth, eyes, nose, female area, kidney stones, congested lungs, skin rashes and Schirmer's test for tear production), and Lupus from the bloods. Worth looking into but medication same to a degree for both. Since getting diagnosed and getting medication things are easier to manage. Hope you get somewhere soon with this. Many of us go private too to get more time with a consult and less waiting.
If you are only seeing your GP….I would ask for a referral to a rheumatologist who deals with Lupus. Most GPs are not up to speed on how to deal with conflicting Lupus blood test results….& although not intentionally they waste time getting the correct medication sorted out, because they are not specialists…& it sounds as if you do need someone to get to grips with things.
Hi AgedCrone ,
Regarding GPs, one I spoke with at my practice said, “You have what?” when I explained I have SLE Lupus….Thankfully some GPS are better than others!
I was lucky and saw a knowledgeable GP who tested me for ANA and dsDNA which were positive, and then referred me to a rheumatologist.I think you need a rheumatology referral to get a definitive answer. GPs don't see many lupus patients and aren't experts on it.
And yes, I had lupus and then fibro - its a very common combination, but there is treatment for lupus, which can be helpful!
Marzipan -
It sounds like you have been really struggling with symptoms getting more severe. Sometimes blood tests don’t cooperate. That makes it hard for doctors and patients. It is good your GP is writing to the rheumatologist. They are taking you seriously.
Was it the ANA or ANCA that was positive? I am not familiar with the ANCA but other members are. If the ANA is positive, labs usually do specifics antibody testing. But they have to look at whole picture. Was there swelling in your feet? Rheumatologist may need to examine.
You mentioned dry eyes. That can be significant too. A forum member mentioned that the best test for Sjögren’s syndrome which a lot of us have is done at the optometrist’s office. Could you get evaluated there? If the optometrist notes dry eyes, that will be important information for your doctors.
The rash is tricky. Rosacea can look similar. Is your GP able to diagnose your rash? Would they make a referral to a dermatologist? Make sure to take photos of rash and mouth ulcers.
Don’t give up. It sounds like you are getting closer to a diagnosis.
XX K
Hi Marzipan 3468,
I was diagnosed with SLE Lupus in June of this year (2022).
The Rheumatologist I saw used blood results, clinical presentation & history to diagnose.
Original bloods done by my GP showed positive for SLE Lupus as did Rheumatologist’s blood studies on me. (I waited 9 months for Rheumatology referral after initially seeing my GP about my symptoms, some of which are same as yours + I have skin & scalp problems).
More recent bloods at Rheumatology Hospital were all normal despite me still having all the same symptoms.
I don’t take any medication specifically for Lupus as since July I, unfortunately have had severe reactions to the 3 different drugs they’ve given me.
Incidentally, I’ve recently seen a Dermatologist who says I don’t have Lupus at all despite 2 Consultant Rheumatologists saying I do!
A few weeks ago, (& because my bloods were all within range), I asked the very knowledgeable & experienced Rheumatology Nurse Practitioner I saw at the Specialist Rheumatology Hospital I go to, “Is Lupus only diagnosed by bloods alone?” She reassured me that bloods are NOT the only reliable means of diagnosis and that clinical presentation + patient history are also considered.
It’s all so bewildering, frustrating, confusing, annoying, conflicting and tiresome being on the Lupus, (& other Autoimmune diseases), ‘Merry-go-round!’
All good wishes to you 🙃
Hi
My sympathy goes out too you I was first diagnosed at around 22 that was due too a positive A&A blood test , another tell tale sign is regular swelling too the nymph nodes, regular illness lots of viral infections abnormal tiredness and joint swelling and pain .
Lupus takes it toll on its suffers both mentally and physically, love and best wishes too any SLE victims reading. X
Ob wow 22 seems young, how are you doing now? I was diagnosed with Crohn’s disease 28 years ago when I was 16 - the older I get the more I keep racking up these diagnoses 😱. I have always suffered with a poor immune system, and am guaranteed to catch everything going. Can I ask with the swollen lymph glands, are they also painful? Mine (in the groin, underarm and jaw) are occasionally sore but not with any noticeable swelling. Thank you for replying 🙌🏽
I've just turned 21 and have recently been diagnosed. Feels very young. How did you cope at the time?
sometimes in life we don’t have a alternative it’s do or die in a round about way , I do think I accepted it because I knew something was not right with my body.
It has been dark at times and have had lots of demons in my head regarding where life goes and exactly what my future is going too look like .
It’s easy too overthink the situation and what I’ve come too realise nothing is guaranteed, we cross roads and drive cars every day and could be killed doing either but we still do these things .
I look at what I can still do and I promise every single one of you there is always someone a lot worse off , prioritise your thinking and thoughts just as much as you do your body .
Blessings. X
aww bless you. X
Unfortunately illness was quite a familiar part of my life , I was diagnosed with ITP at age 11 my platelets dropped too 4 I was bruising like a peach and smothered in a rash , I guess I was never right from there , I was blessed too be able too have three children but do feel my body really suffered my last two there was only 13 months between them it takes no mathematical genius too work out I got pregnant very quickly, omg it did totally ruin my body and after 6 months of having my third child my body just felt so weak the tiredness was off the scale .
After repeated blood tests it was clear there was a problem that being lupus sle .
I would be really interested if any other lupus patients had a childhood diagnosis of ITP, I believe there is a link, thanks for reading and my sincere love and blessings too all who are dealing with broken bodies . X
Thank you so much, you're very right and have a very reassuring mindset!! Not sure if you've read my first response to this post but I was diagnosed with ITP first - I was 20, not exactly a child but it was my first diagnosis.
Hope you are coping and doing well xxx
wow
Very similar apart from the age were you put on high dose steroids for the ITP and that was so hard going from a very small frame too probably 2 X my normal size I hated the fat face or moon face I think they call it , I was 11 at the time and when eventually returning too school it was hard explaining my massive change .
I believe if I never had ITP then I would never have got Lupus but does seem too be a definite link ?
I was never able too tolerate the immune suppression meds for the lupus , I’ve had a mental block with going on oral steroids but do receive a depo injection which does sometimes show me a little less pain but I can’t remember the last time I was pain free
Any help or advice on treatment would be appreciated.
Ahhh I can imagine must have been so difficult at such a young age. The high dose steroids were not fun. I'm still on prednisolone for the platelets but much lower dose so think I am managing okay. Lupus and ITP defo associated - one of the clinical features for diagnosing Lupus is thromboctyopenia so I am not surprised.
I am on hydroxychloroquine and azathioprine on top of the pred - think I am managing relatively okay though but since being on them I just dont feel like myself its all the mix of side effects I think. They havent kicked in either yet so just have to keep going. What meds did they give you and are you on any now?
Is there any evidence that the Lupus maybe caused as a result of the steroids do you think? I was also on steroids at a young age for Crohns. Maybe it could be the meds and not the conditions? 🤷🏻♀️
sorry I just saw this! I doubt it was I was only on the steroids for about 2 weeks before they diagnosed my lupus, all the symptoms were indicating lupus at that point. Do you think yours was caused by the meds?
I was diagnosed through a skin scrape,so not sure on how your shin is,but possibly enquire into having one done,hope you get your answers
I have not clue of the different blood test. Its always a blur to me after they had finished saying what it means. The problem with lupus is that it's quite tricky and can be mistaken for other things. I sincerely pray the Dr get the right diagnosis and treatment to help with your pain and daily struggle . Xx
It took almost 20 years for me to be diagnosed as I had another health condition and Lupus can apparently mask itself behind it. I was passed from dermatology to rheumatology and back again at my local hospitals. I had multiple blood tests and biopsies on the lesions on my skin and on my neck close to my swollen lymph glands. I had dry eyes, hair loss, painful and swollen joint flares. My CRP levels were at maximum. Nobody could diagnose me with anything and the flares continued along with the lesions. Finally after all these years I got the chance to go from my local hospital to a London hospital where a specialist Lupus team met with me. I was examined and asked a series of questions and my symptoms and answers pointed to Lupus. The team requested all my previous years test results and communications from my local hospital. When they looked back at the history they found markers in my bloods pointing to Lupus. I was then diagnosed with Lupus. I have now been taking Hydroxychloroquine for a couple of years, where the dosage is continually adjusted and I am monitored regularly. The fatigue, sweats, swellings, hair loss, ulcers in my mouth, joint pain, brain fog has improved somewhat but I do still have flares but no way as frequent as before. I'd say the fatigue, energy levels and brain fog continues to be a problem at times but is far better than all the hours I was sleeping. My energy levels are amazing when on the right dosage of medication. I find the medication helps with my arthritis from another health problem not related to Lupus. I also use tacrolimus topical ointment for the lesions but to date they have no effect on the rash/lesions which continue. Infact when I had my first Covid vaccine the lesions totally vanished after 3 days which was absolutely amazing. I wasn't able to have anymore covid vaccines due to multiple severe reactions to the first vaccine so unfortunately the lesions have returned nearly 2 years later and my medication has been increased again and I am being monitored with bloods, examinations and face-to-face meetings. I suggest you ask your current consultant for a referral to one of these Lupus teams. I am so grateful that I got help finally. Not every single day is wasted away anymore as I get to function better but like I said you still have those bad days but are grateful for the good ones which for me were non existent before. Wishing you good luck in finding the answers you need to help you.
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