Hi all just looking for some advice if possible please. Has anyone had lupus diagnosed without a positive ana ? I have all the symptoms aside from swelling but the rheumatologist has now diagnosed fibromyalgia due to no positive ana. My liver enzymes have been raised since 2014 and I've been having symptoms show since 2020, liver scans and biopsy show my liver is fine but gastro has said he's only ever seen these results in someone who is 80 years old or has an autoimmune disease. I feel like I'm going crazy my gp believes me that it could be lupus and expected the rheumatologist to agree and sign off on it without the positive bloods but my rheumatologist seemed set on sarcoidosis which I do not have. Everything came on after I had my second child and I had extremely bad pregnancies on both. I get the rash on my face as soon as I'm in the sun or in the house when I'm really bad, I have the really bad mouth ulcers that take over my mouth, fatigue, muscle pain, headaches/migraines. Rashes appear on other parts of my body too. I just feel so ill all of the time I just want to be able to look after my children without struggling everyday 😔 sorry for the long post I just feel so lost. Thank you if you read this 💕
Feel lost : Hi all just looking for some advice if... - LUPUS UK
I'm 100% Lupus and 100% negative ANA. Diagnosis supported by two very respected consultant Rheumatologists. I have family members in this situation too. And a positive ANA doesn't necessarily mean you have lupus either. Your medical team should be treating the patient and not the blood results.
If they think you have sarcoidosis what is your treatment plan?
If you aren't getting anywhere maybe Lupus UK can advise you on how to be seen at a centre of excellence?
Sorry for the late reply, thank you so much for that information. This is the problem where I'm stuck tbh and getting misdiagnosed or not diagnosed at all and just in limbo with no treatment etc. They haven't mentioned any treatment plan the only one that has is my gastronolgist and hes explained that if nothing comes back off the bloods the 2nd rheumatologist wants to do and the liver enzymes are still high he will do a trial of liver tablets but he's unsure how it would work because he believes there is definitely an autoimmune disorder there its just trying to locate which one to be able to treat it correctly. He also agrees that fibromyalgia can be misdiagnosed and then later down the line the bloods show positive ana which would then give a lupus diagnosis. I just feel like if it wasn't for him and my gp I would be stuck with a diagnosis of fnd and fibromyalgia and sent on my way to deal with these debilitating symptoms and no help. Thank you for taking the time to read and reply I appreciate it xx
Hello - so sorry for what you're going through. I do empathise.. as will so many on here.
I was 100% SLE Lupus for 3yrs but then my rheumatologist changed it to "lupus like syndrome" as I had never been ANA positive and that is the entry criteria for diagnosis according to the regulations currently. It was very upsetting to have that flung on me... mind you, I pushed for it in a way as was feeling as if had imposter syndrome all the time (as was seronegative).
Anyway.... What were your other bloods? Very low Complement 4 is becoming more and more a huge diagnostic for lupus... and mine is constantly, also off and on complement 3. And how are your neutrophils? I have autoimmune neutropenia and once had low cardiolipin and Igm or something. Have they done all your immunoglobins ie all the other antibodies? My rheumatologist who I actually saw in person this week for the first time in over 2yrs(thanks covid!) said there are tons more antibody bloods to test for now and is getting me to have a test which he's sending off to Bath to have checked for all of the newer rarer ones... Could you contact your rheumy and ask him to do this? Also ask your GP or rheumy to send you your blood results - you have to push for this sort of thing, so you can be sure what's what, and read up on all of what they mean on the web etc.. on reputable med research sites etc. It can be a battle to get heard sometimes, with all this and conflicting diagnoses from various clinicians... and armed with more information on your specifics plus what they mean via relevant med sites (and from those on here who have so much learned experience) you'll have more questions to pose/get your clinicians to think more deeply on your particular symptoms and what they might mean. It took me 5 yrs to get the proper diagnosis by my top rheumy for Sjogrens... as a previous one didn't read the lip biopsy correctly when it was clearly Sjogrens, plus all my other raging symptoms.
Hope that helps. Any questions, do ask... been through it and am still on occasion..! Oh - and you can call the Lupus UK team for support - really helped me when I was at your point many years back. And read their info on their website - including how to get the best out of appointments and all sorts. All the best... please don't get too disheartened.
The difference between lupus and lupus-like seems almost irrelevant. You should never feel like an impostor! Your tests weigh heavily in the lupus camp and, as HappyTulip says, they have always known ANA negative lupus exists. It could be cross-reacting antibodies that cause the negative test.
It does seem with better testing rheumatologists are reserving the lupus diagnosis for those with more clear cut cases and with anti DNA antibodies. But they recognize now many of us with lupus-like illness and UCTD.
As @happytulip says, treat symptoms, not a diagnosis.
Thanks so much for your kindness KayHimm - hope you are doing ok?
For me anyway, it's really important to have the right diagnosis (rather than off/on affairs) as, like most of us, I have so many other health issues ie ongoing heart, recurrent breast cancer (which is linked to Sjogrens - and my undiagnosed but highly symptomatic mum died of the big one there ie DLBCL), eyes, GI tract, skin, all my bones and tendons etc etc. Frankly it seems there isn't any part of me not now up spout even more than ever and when I see the clinicians in the teams supporting me for each issue it is very important they see the clear diagnosis as it is so systemic with so many linked-to symptoms - it makes them realise more of what could be going on, or try to look into it - rather than treating it as a stand alone issue, not understanding how the course of it might go. I have a huge amount of experience with all this now (and I'm sure you do too, as we all do!).. and I've had a couple of times where the clinician was dismissive of my "lupus like" because it stopped being a definitive SLE diagnosis... and discounted that the issue could be linked to what I was seeing him for. Of course this is a problem with individuals rather than clinics, but, still.... I am fighting all the time to ensure I am heard, and that it is all very much noted by all, rather than just possibly seeing on the paperwork (or not!) I am on methotrexate, nifidepine etc etc which doesn't even register with them until I bang it home why that is and what it all might mean going forward.
It can be a difficult ride... But thank goodness for everyone on here. I've been going through a bit of hell in the last 7mths and about to have a load more... so I am immensely grateful to be able to return to the fold and feel so supported.
Thank you again x
It does sound frustrating. I am sorry you have to feel as if you aren’t taken seriously without a diagnosis of lupus. It is awful to be dismissed. I have never had they experience. If anything, I have always felt doctors are on alert for symptoms that are caused by my connective tissue disease.
Maybe the new testing will make things clearer with you.
Thanks KayHimm. Well it's a bit better now... but was a bit pants at times in the last two years, probably due to Covid and all that. I think everyone was finding it very difficult. It's all come together pretty much... but I have to bring it up proper each time I meet a new clinician - as half the time they really don't seem to have the time to have read my notes - my file is split in two now so it's hit and miss what part they'll get on the day, if at all! My rheumatologist talks to me about "your lupus" and "sjogrens" all the time now.. so I think things have come into focus all round. Yes, will be very interesting to see what new bloods reveal... if anything. Oh and meant to say, I've never heard of cross-reacting antibodies before - my rheumy has never brought that up as a possible. Any info out there on this you'd recommend to read? Thanks again, D x
I just read true ANA negative is extremely rare since they started using new tests in the 1990s. I believe RO/LA antibodies were one of them that they thought could cause the ANA to be negative. I remember that was what they thought may be happening with me. I did turn positive, so maybe this was the case.
This sort of explains why they don’t diagnose lupus without a positive ANA or, if negative, a positive kidney biopsy.
Doctors don’t always read your chart until after they see you. Do you have to remind them of your lupus diagnosis each time you see them?
It will be interesting to see what new tests your rheumatologist is doing. They continue to discover new antibodies.
It sounds like things have been rough for you. I hope they get you moving forward and feeling better.
Thanks KayHimm - will have a read up.
My rheumy is no problem.. it’s new clinicians in other specialisms ie ophthalmology, ENT etc.
Oncology was the same at first, but they’re all up to speed now 3yrs down the line, as I’m a frequent flyer and get discussed in their weekly multidisciplinary meetings. They do try and minimise there right now however, as want me to have all sorts of nasty therapies now - at all costs as they’re in the business of keeping people cancer free.. which I understand, but only I can know what I think I’ll be able to handle so it’s hard as have rebang it home ie the side effects that’ll no doubt be too difficult to bear considering my base line health. Difficult conversation next Tuesday. Going to tape it so can have a think afterwards. He’s the best so I’m sure he’ll be honest as he was 3yrs ago.
Hope you’re doing ok. Thanks again, D x
Sorry for the late reply, thank you so much for that information. Yes well this was the issue see most of the rheumatologists haven't offered any treatment plans or ideas the only ones that have are my gastronolgist or my gp but that being said both are only trials as one is for the liver enzymes issue and to see if that helps me feel better overall and the other was steroids which again is not a long term solution. Other than that I think the only other thing that has been mentioned is gabapetin? Might be spelling that wrong but my gp is reluctant now to trial anything due to nothing coming back from latest tests etc (still waiting for bloods that have been done this week also) so again I'm just stuck in limbo as without the diagnosis they won't treat and its just a daily battle with my own body. Thank you for taking the time to read and reply I appreciate it xx
You do sound complicated. Yes, it is important to feel better regardless of the diagnosis.
I don’t hear that they question whether there is something going on. It hasn’t made itself clear to them.
Would you consider asking the rheumatologist if there is something- Plaquenil or low dose steroids - they would be will to try to get you to function better. They seem to think it is inflammatory in nature, so maybe they would treat without a specific diagnosis.
Not knowing is the hardest.
Yes unfortunately I'm very complicated 😔 i never thought when I started having symptoms I would still be bad this far down the line or still not sure of what I have, so far I've been diagnosed with fnd, colloid cyst and fibromyalgia they believe sjordens syndrome but not sure if they've diagnosed it as they've only mentioned it more than once and said I probably have it. No they haven't questioned that something is going on thats the only good thing it's just that they cannot pinpoint it which is probably why I have so many specialists involved plus the enzymes have been raised since 2014 but only now being picked up correctly and monitored which is why they did a biopsy last year but to no avail.
My rheumatologist has only suggested the tablet above my gp has offered a trial of steroids because of how i reacted to a dose of steroids for an allergic reaction but my gastronolgist wants to avoid the steroids as they only mask the symptoms and don't provide a long term solution, however what i found interesting and my gp was the steroids I was put on for the allergic reaction (which made me feel so much better and normal again) was the one they usually use initially for lupus or rheumatoid arthritis so he thinks that is not just a coincidence.
Yes I think that is what im struggling with the most because if it was something diagnosed that could be treated and helped i would be able to work out a plan going forward without this im just stuck trying to get by each day. Thank you again I appreciate it xx
Anyone would want a diagnosis. All of us here know at least part of what you are going through. It really is like being in the dark.
Sjogren’s can be particularly hard to pin down too. You got a clear answer about the steroids.
I really hope the additional testing provides insight.
That's interesting that you've responded to steroids n yes your right lupus does respond to steroids. I've been on Prednisolone since 2018 n I'm gradually tapering down..but when I've been at full flare I go up to 20mgs per day. If you have a look further on here you'll find that many of us are on steroids.💜🌈😽😽xx
Yes its a strange one isn't it I was just honestly surprised at the difference in how I felt on steroids to off them and it wasn't even a high dose or for long. Yes I think that was the one I was on when I googled it it came up as the first one usually used for lupus and I think rheumatoid arthritis aswell or something like that. I think that's what also surprised my gp because of how I responded to them but like they say its not a long term fix so they want to find what is the issue to treat it correctly which is currently proving difficult xx
Sorry for the late reply, thank you so much for all that information. I must be honest they do not thoroughly explain the bloods they are doing for me or the results of said bloods aside from saying things like no sarcoidosis shown or your ana negative aside from that I do not get the full break down they usually just say its all normal. I'm just really struggling because its been going on for 2 years now (I know usually these type of diagnosises take years) and I literally just feel like everytime they say oh we think it could be this or were testing for this and then it comes back normal but my liver enzymes remain elevated to the point of concern im just back to square one or fighting for someone to believe there is something wrong with me and I know my body. All I literally want to do is to feel slightly more normal than I do now so I can look after my young children by myself or get dressed by myself and not be so fatigued I have to sleep in the afternoon 9 times out of 10. I just honestly don't know where to turn anymore, thank you for taking the time to read this and reply I appreciate it xx
Oh and just to add they also believe I have sjordens syndrome so again I believe there is a link between all of this xx
oh well yes - sjogrens brings on exhaustion and so much the same that lupus does... but they are distinctly different in some ways... bloods for instance.. Have a read of this:
Neurological and Inflammatory Manifestations in Sjögren’s Syndrome: The Role of the Kynurenine Metabolic Pathway
Should help. Do you have very dry eye and mouth etc? Do you drink at least 2.5litres of water a day? And have a very good diet? So important... I drink all day and my bod goes into a kind of irritable panic if I don't.. plus I can't swallow very well ;)!
You can ask your rheumy etc for a copy of your bloods. Please do... and then you'll see any that have "below reference limit" or "above reference limit" etc and then you can be more up on what they are saying about you - plus you can read up about what that means in med papers on the web etc. It's your data - you can very much ask for it. I have all my bloods given to me by my rheumy each time I see him, but, as I'm on methotrexate I have regular 3 mthly (previously every fortnight until settled down, 4yrs ago) blood tests to keep an eye on things and I am signed up to the Patient Access or System Online website which is through your GP surgery. Ask them for the form to fill in to gain access to all your records - each time they do a blood test you can see the results after they download them. And you can also see all the letters too and from your clinicians... It's beyond useful I find!
I do hope that helps. Any more questions, do ask x
Thank you for that, yes I got told I have clinically dry eyes years ago by an optician but didn't think anything of it and used drops but since I started having symptoms my mouth has been exceedingly bad but I've suffered severe ulcers for years in my mouth. Yes I do drink constantly and have a healthy varied diet I done a trial and error sort of system with a lot of things and my diet was one of the first I checked over. Thank you for that i will have a read over it and I will also request my blood details from the rheumatologist its just all quite confusing. I am on the gp portal but I don't know how to access my notes, that will be top of my list now to ask them for. Thanks again I really appreciate it xx
Why do you think it is not sarcoidosis? It fits your symptoms and without positive ANA is a more possible explanation for you liver numbers. The treatments for both sarcoidosis and initial lupus are both steroid based.
Sorry for the late reply, thank you for that. Tbh the only thing that matches so far is lupus based on the symptoms and the fact that they have said more than one that they believe I have sjordens syndrome. Other than that I would have no idea it would have to be some autoimmune condition I have never heard of but funnily enough I did not know anything about a few that I have been diagnosed with before I got diagnosed. Thank you for taking the time to read this and reply I appreciate it xx
Hi Haylz 🤗I think we have all felt lost at times..I know I certainly have! The good news is that you've found this fabulous forum!! You've come to the right place to discover the twists n turns on the rocky road that is autoimmune disorders..you're not alone!!
Stick with us n keep posting questions n we'll help you to navigate it all 💜🌈😽😽xx
Sorry for the late reply, thank you for that! It definitely is a difficult ride, originally I got diagnosed with fnd but because my liver enzymes do not correlate with that my gastronolgist is certain that is a misdiagnosis as my liver enzymes are too high to be fatty liver and hes only seen them this high with someone who's 80 or an autoimmune condition he also done all the tests and a liver biopsy to rule things out. I just feel so stuck in limbo and as if im hitting my head against a wall trying to get someone to believe something is wrong with my body and I need help 😔 if it wasn't for my gp and gastronoligist agreeing and listening to me I would of been left to deal with these debilitating symptoms with no plan or course of action going forward and just left to get on with it even though its not physically possible. Thank you for taking the time to read this and reply I appreciate it xx
It's quite common unfortunately FND 😔Or it's all in your head!! Honestly it's ridiculous whatever stage of life you're at. Have u had any type of virus eg glandular fever? I believe that shingles set me off on my lupus journey.
Lupus is more prevalent in females during hormonal disruption which is why lupus affects 9 out of 10 women..there aren't many guys here. You've had two difficult pregnancies. My lupus came on during menopause n hormones definitely play a part.
You can ask your GP to refer you to a rheumatologist..you have got a couple of doctors on your side. Also check your blood results for anti Ro and anti La antibodies..these are a sign in the blood of Sjogrens along with dry eyes n mouth.
The liver biopsy might flag something up to your enterologist too.
Don't lose hope hun we can help you through this 💜🌈😽😽xx
Yes I'm lucky I have the gp and gastronolgist to be fair as everyone else i speak to as soon as they see my fnd diagnosis they dismiss any new concerns all down to fnd even if its a new symptom completely unrelated to fnd. I was sick as a child but mainly with ear issues ill have to check if I had any others such as glandular fever as I haven't thought to ask my mum beforehand for those items its mainly been family history of illness etc. Yes I have noticed that from my own reading/research I definitely had two horrific pregnancies and was lucky both were ok but after my first I did not have any symptoms my second seemed to be what set everything off after he was born which does make me question it aswell.
My gp did refer me to the rheumatologist originally as he was 99% sure he would give the diagnosis of lupus even without the bloods as all my other symptoms match and the typical butterfly rash but the rheumatologist I saw privately was set on sarcoidosis the 2nd rheumatologist I've seen was nhs and he was the one who gave the fibromyalgia diagnosis but both of them said they believe there's sjordens syndrome but never confirmed or said if they checked the bloods for that specifically.
I think I'm definitely going to need to ask them for a full breakdown of the bloods and information. I have had the liver biopsy done and back last year but this showed no signs of fatty liver or liver autoimmune diseases my gastronolgist is unsure now which way to go for the enzymes which is why he suggested a trial of liver tablets to see if it helps me overall too but he also agreed it could be misdiagnosed as fibromyalgia and later on when ana shows positive that I would have a lupus diagnosis. Its just all very complicated, thank you again for your response I appreciate it xx
Do you keep a symptom diary? It's a very useful tool. Record everything even if you think it's irrelevant. Include other factors when you're feeling worse such as what the weather's like, what you've eaten, have you managed to rest etc. Take photos if any skin rashes too. I have found through keeping a diary that I'm extremely light sensitive as an example through keeping notes I've realised that's it's not just sunlight with me but flourescent lighting too.
If you're sensitive to UV it's important to wear factor 50 sunscreen, wide brimmed hat, shades n cover up all year round. In the lighter months I have to avoid going out between 11am n 4pm. I haven't got small children though n I appreciate that it's incredibly hard being a mummy anyway..even worse when your struggling with this stuff. 💜🌈😽😽Xx
Yes I have been keeping a diary for I think around 6 months now I do try to include most factors in even if irrelevant but hadn't thought of adding in the weather etc. Yes I have got a whole file of rash pictures or involuntary movements 🙈😂 I've tried to pin point certain patterns in days I feel worse etc but haven't been able to figure it out thus far. Yes a little bit difficult for me when it's sunny as the kids always want to do something usually my partner goes with them if I'm really bad but if I'm having a bearable day I will struggle to do something but tend to try and stay shaded as much as possible lol xx
Thank you all for all your help, I've managed to find out i have a vitamin d deficiency too but they are worried there's something else going on to do with possibly an absorption problem? Unsure exactly what that means, I've also requested my blood test results but so far they've only provided me the most recent ones done not all of them however I can't make sense of them 🙈. On new tablets now for the deficiency so fingers crossed that can make me feel somewhat better than what I have.Thanks again all I do appreciate all the help that's been given xx
Hi there. What do the neutrophils and complement 4 and 3 say? And haemoglobin? Did they do your immunoglobins (Ig’s)? Maybe post them on here, making sure your names and details are hidden? Lots of us on here cld help explain what they mean x
OK fab you posted these. I'd post all of the others to if you can. Well your "High alkaline phosphatase levels may mean there is damage to your liver or that you have a type of bone disorder. Liver damage creates a different type of ALP than bone disorders do". I've never heard of it - I didn't write that - I got it from the web, so don't quote me.. something to discuss with your clinicians. And the one after it is not within borders of ok-ness either - can you see? Just look at all the results of each blood test and go across to the list where it says what the normal limits are. Your other list looks ok apart from one and you can see it says "High" or something... I can't open it without losing what I've written here I think. So will write again. do post the other lists if you can. x
oh yes - your platelet count. Mine's quite high off and on - it means... according to Dr Google.,.. ooh well I'll let you look that up - it's a clotting test so a bit high on that - but it's really only slightly high - I don't know if that matters. Really good to ask whoever has the results to talk to you about them. Nothing is screaming out from the first two lists so far to me at the moment apart from the High alkaline phosphatase levels and the one under it.. but I'm no doc of course! Your neutrophils, Complement 4 and 3 are ok which is good. x
Thank you for all information I really appreciate it! that my liver enzymes have been high for years which I'm assuming is the alkaline phosphatase and that's been under investigation for the last two years one of which included a liver biopsy ruling out any liver diseases or damage etc and this is why my gastronologist believes there's a underlying autoimmune disease because of the levels being slightly too high for it to correlate with anything else or the other diagnoses. I understand it a bit better now that you've explained where the normal levels are so thank you very much for that I've never seen any blood results before usually only the letter to say whats what. When I looked at the complement 3 it did show slightly high at 1.72 but again like you I'm no dr so have no clue if this can just be slightly high without any concern. I have requested the doctor to speak to me again regarding the results as I only had a letter to say the vitamin d deficiency was there but there was 2 specialists doing the tests between them so unsure if im due a second letter or more information.
Thank you for all that help though its definitely helped me make more sense of it and hopefully find out some more when I can speak with the doctors directly xx
You're so welcome.. I know it's a bit confusing at first... and er, along the way! The complement being low is the thing I think, rather than being high.. you'd have to google what that means. My complement 4 is extremely low, always has been, and the C3 is in and out of low. Both are a lupus pointer (I was SLE for 3.5yrs but then my rheumy changed it to lupus like syndrome as I've never had a positive ANA test). You could probably work out what all the rest mean.. I just google the name of the blood test and add low or high and up comes some sort of explanation. I find that if my test are only slightly higher or lower than the norm then it just gets ignored ie felt to be satisfactory. Hope you get more support on all of it - there are some great articles on the web - and also the latest guidelines for diagnosis. All the very best to you, D x
Thank you, yes definitely confusing haha! Yes now that you have explained how they work i have been able to Google and try to get an better idea of what's going on. Ah right I understand I wasn't sure if it was low or high that showed the possible lupus, I've definitely found using Google for more specific items has helped. Yes it does seem that most will allow it to be slightly above or under normal from what I can see just hoping I do get further information from them now or see what else they want to do going forward. Thank you again I really appreciate it xx
Just a suggestion but Lupus UK organised a superb discussion about blood tests. The recording is available via their website, I believe.
The ANA negative or positive Lupus question is discussed there and would answer that part of your question from a highly regarded Rheumatologist perspective.
I always refer to it, now and again.