hi, never posted on anything like this before but you all look so nice. I am 39. I developed an unprovoked DVT at the age of 16 had another when I was 19. Have various clotting problems through both my pregnancies too. No underlying cause was found.
Ive had psoriasis since I was 8 and was treated for ankle swelling about 10 years ago and was told I had psoriatic arthritis and 6 years ago was diagnosed with coeliac disease. I’ve been in pain for years with my joints and just ignore it and carry on. I’ve had a rash across my face which I just put down to rosacea.
Over the last few months I have started developing rashes on my hands, feet and arms. These itch and burn and are quite painful then go away after a day or so. They tend to appear symmetrical too so if it’s on my right arm one day then the same place on my left the next.
I’ve been having cold sweats in the night for years too and am always exhausted!
I have recently seen a doctor who has done multiple tests and was convinced based on my face and other things going on that I had lupus. She said my face doesn’t look like rosacea. I had tons of blood test, both the inflammation ones can back raised but my Ana was negative. She’s referred me to a rheumatologist anyway as she said I need to be seen but a negative Ana means it’s unlikely to be that.
I’ve seen that you can get negative Ana and still have lupus in rare cases, is this correct? I thought I would have been positive have other autoimmune conditions.
I don’t want to have it but it would just explain so much stuff that I can’t link to much else.
Any suggestions to help would be much appreciated, thank you 😊
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Flakeyy
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hello flakey: yes, I am one of the rare few who are seronegative for all my autoimmune conditions including SLE, but even so I meet enough official diagnostic criteria to be formally diagnosed with all of them. This link is to a short summary of a recent scientific study on seronegativity in autoimmune conditions…I’ve read it several times & more or less understand it, despite the scientific terminology, so maybe it can help you too:
you’re v welcome…it’s tough, but if you can hang on in there: you will figure out what’s underlying/causing your symptoms 🍀🤞✌️best thing is you’re here where there are patients finding their way through similar probs…LUK & this terrific forum have made all the diff for me over the years🤗
We know my seronegativity is due to immunoglobulin deficiencies…it was WONDERFUL when my consultants finally figured that out! This is mentioned in that last paragraph in my link:
“Finally, disorders leading to a defective production of immunoglobulins, as in the case of common variable immunodeficiency [28], may predispose to the development of seronegative AID, the diagnosis of which is particularly challenging for this reason. For example, celiac disease and autoimmune gastritis may be associated with common variable immune deficiency [29], and the diagnosis of these two conditions can only be made on histological grounds, after the exclusion of other diseases leading to gastric and duodenal atrophy. Fig. 1 summarizes factors leading to antibody negativity in AID.”
I knew about IgA deficiency causing a possible false negative, but not about it in regards to the ANA test. I feel like I should've realised, so thanks for bringing that to my attention! My IgA is lower than normal and my IgM is higher, but no idea why and no one has ever looked into it (beyond referral for coeliac, which they then said I didn't have). I had an ANA test January 2022 which was negative and another last month, which I don't know the result of yet. I'm expecting them to tell me everything is normal and discharge me back to GP, but hoping they'll find something to explain what's going on.
you’re well informed! I hope you’ll find the explanations you need asap 💞
My childhood onset chronic immunoglobulin deficiencies are IgG, A & M, called panhypogammaglobulinaemia. It’s a type of Antibody Deficiency Disease, that goes under the umbrella term Primary Immunodeficiency Disease. So I’ve proven unable to make antibodies in response to vaccines. Of course am also in combined therapy meds for my childhood onset lupus (hydroxy + pred + yes myco) which further suppress my immune function. And I’m 70, so immunosenescence has set in. It is what it is 🤷🏼♀️
I have no idea what's going on with me at the moment - one minute I think it's Lupus/Scleroderma/inflammatory arthritis/ulcerative colitis and the next I wonder if it's all in my head. I do have psoriasis, some hypermobile joints (possibly EDS) and Raynaud's. They just found some inflammation during a colonoscopy and I suspect I have Erythromelalgia, but awaiting these blood test & x-ray results to shine any light on the other things. I just know I feel utterly dreadful, at the end of my tether with it all and have an awful feeling I'm not going to get any answers!
it’s so important you’re here…this forum is probably one of the few places where there are good folk who really understand how bewildered, unsettled, anxious & unwell you feel about all this, and you need (we all need) not to feel isolated because that makes us even more vulnerable & worried, yes? That’s how I felt all my decades of seeking convincing diagnosis & treatments that can help enough to get me feeling that important bit better…& I’ve been here listening & learning for so many years that I’ve realised pretty much all of us feel this way…& we do eventually get our versions of these rare conditions figured out…so I’m glad you’re coming here as much as you can & reaching out about your feelings here as much as you can: we’re all right by your side, FredaN 💞💞💞💞
I don’t know if I’ve ever been tested for immunoglobulin deficiency’s. I know I've had a lot of test done in the past and present. I will defo keep this to hand though. Just seems crazy to have 3 autoimmune diseases but be negative haha
Hi, just wanted to update you. I saw a private consultant today and he is 90% certain i have APS and lupus SLE but I’m in the 5-10% of people who are seronegative like you xx
Hi Flakeyy. The very first things you’ve written made me think of antiphospholipid syndrome (APS). It’s an autoimmune disease with some similar symptoms to lupus but it makes your blood clot more easily. It’s a cause of strokes, heart attacks, dvt, etc and it also causes problems with pregnancies. This condition was only described as a separate illness in 1983, before that it was thought to be a part of lupus. 20 years ago it was still very unknown, I know as that’s when I was finally diagnosed, but it was a fight to get a diagnosis. It is possible to have both lupus and APS, I have both.
I think you ought to make sure that you have been tested for APS given your history. There are 3 blood tests and you should have them all.
A good site if you want to read about it is APS Support UK.
I’m so sorry that you have had all these problems and that you can’t find any help yet.
thanks for your reply, I’m positive I have been tested for this in the past when I had my dvts but there was never an underlying cause found unless I am testing negative for these things because I’m seronegative for all autoimmune immune diseases even though I have 3 of them already.
ANA isn’t normally used for diagnosing APS. Just the three blood tests for APS. But you need to ensure that all 3 tests are done because you only need to be positive on one of them. The anti beta2 glycoprotein1 test possibly wasn’t around when you had your DVTs, it certainly wasn’t in common use.
Hi, just wanted to update you. I saw a private consultant today and he is 90% certain i have APS and lupus SLE but I’m in the 5-10% of people who are seronegative x
Negative blood tests are not as uncommon as you think when you have lupus. In our lupus group at least three in 20 of us are negative. It's getting the diagnosis without the bloods is the tricky bit. Check out the criteria on Lupus uk for symptoms of Lupus and see how many you can check off. Take pictures of rashes and keep a diary. I had a positive dsdna blood test once and then its been negative since. I have Sjogrens Syndrome and Fibromyalgia as well. I get red itchy sometimes burning rashes that come and go in days or weeks in different places. Steroid cream is pretty good for that. I got my diagnosis from symptoms alone (from private appointments and a Lupus centre of excellence). Dr. Arvind Kaul of St. Georges Hospital, London is one of the ones leading the call for Rheumatologists to not just seek positive bloods for diagnosis (see attached). Find a Rheumatologist who specialises in autoimmune disorders, as many do not, be referred to one by your GP or go private and then be armed with as much documentation and pictures as you can. I was 38 when my symptoms started to go into overdrive, it seems that sometimes you hit a point where your body gives up fighting and lets the disorder have more influence, a tipping point. Overwhelming fatigue most if not every day is one of the biggest symptoms. If you feel you fit the criteria don't give up. Once you have one disorder its not uncommon to collect another in the world of autoimmune!
thank you so much for your reply, it’s really helpful. I’m booked in to see a private consultant next week. Don’t think it will do any harm getting as much knowledge as I can x
Definitely. Really research all you can. There are podcasts from bath institute of rhuematology that are helpful. birdbath.org.uk or I watched a you tube recently by an American rhuematologist which was excellent and recommended on this site, sorry can't remember his name. I think straitedcarraca on here recommended it. Americans always ahead of us usually. I have a great book published by the London lupus centre from Lupus UK which is great aswell. I hope for the best for you. Let us know how you go.
Hi, just wanted to update you. I saw a private consultant today and he is 90% certain i have APS and lupus SLE but I’m in the 5-10% of people who are seronegative like you xx
Brilliant, once you have a diagnosis you are monitored and get medication which is better than not being diagnosed in the long run. I'm still negative for all bloods but have all the symptoms of Sjogrens and Lupus. It's now a case of keeping up to date with the latest treatments and symptoms as your GP will probably not know everything to look for. I think the seronegatives are growing out there.
I think so too, he was very knowledgeable and said there are seronegative people out there but it doesn’t mean they don’t have it. I hope more do pop up as it will help others too x
That would be so good for others who are undiagnosed because of being negative with stuck in mud Rheumatologists and for us so we are less rare and continue to be taken note of. I hope all goes well for you. xx
I'm a walking, talking negative ANA lupus patient. My "ridiculously bizarre immune system," those are the words of my Rheumatologist, means that my my anti bodies are negative and inflammatory markers blunted.
Hi, just wanted to update you. I saw a private consultant today and he is 90% certain i have APS and lupus SLE but I’m in the 5-10% of people who are seronegative like you xx
Just want to add to EOLHPC ’s knowledgeable post that people can have lupus features without meeting classification. You already have diagnosed autoimmune disease. I would guess the main thing would be isolating which new features are consistent with lupus. It seems very significant that your GP does not think your facial rash is rosacea - the most often look alike rash.
You will get a thorough work up. It sounds like you need new treatment no matter how the rheumatologist explains your symptoms.
It seems people can be diagnosed with both psoriatic arthritis and lupus. Complicated, right? Your GP is wise to get you to a rheumatologist.
Welcome to the LUPUS UK Community Forum, I am sorry to hear you have had a difficult time with your symptoms, I have attached below a link to our publications that you might find useful to read, particularly the ‘Symptoms and diagnosis’ publication:
Alternatively, you can request or download our free information pack using the following link below: lupusuk.org.uk/contact-us/
I have also attached a link that you may find helpful to read before your appointment with the Rheumatologist, which has information on getting most out of your appointments and what to do if you wish to change consultants:
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