Not Lupus: I was diagnosed with Lupus 15 years ago... - LUPUS UK


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Not Lupus

fifi6 profile image

I was diagnosed with Lupus 15 years ago from complaining of chronic fatigue! My blood tests apparently indicated lupus at the time because of a raised ANA test. I have lived with this diagnosis for all if this time but luckily have always refused hydroxychloroquine because of potential eye problems.

Today, I was seen by a lovely consultant at London Bridge Hospital and after looking at all of my previous blood tests and asking lots of questions has said I do not have lupus... apparently I just have raised antibodies and suffer from fatigue, which can occur without any particular diagnosis!

Has anyone else had this experience? 😙

26 Replies

Interesting. How do you feel about it? Do you think they are correct? Have you been under the care of a rheumatologist for the past 15 years? Medicine is never black and white, more 500 shades of grey! I wonder how many of us would get a different diagnosis from many different doctors. I hope you are clearer in what's going on with you but if it were me I think I would be happy but also very confused.

I'm with HappyTulip - think I'd be happy too as long as you don't feel that you are being fobbed off in some way or that your illness is progressing?

I have terrible fatigue too but have a definitive diagnosis of Sjögren's Disease now having previously been misdiagnosed with and treated for RA. Unlike you I did accept the need for DMARDs and have tried and failed to tolerate four antirheumatic drugs including Hydroxichloraquine. Now on a kidney immunesupressant drug called Mycophenolate. I don't really know if I'm crazy to submit my body to all these powerful meds or not but I guess my fear of organ involvement has replaced my previous terror or joint deformity?

There was a chap who posted here recently about his wife and son having been diagnosed with depression and chronic fatigue and feeling horribly unwell for a long time following a virus. Finally they went to see a specialist at the London Lupus Centre, who agreed that they had ME but put both on Hydroxichloraquine and this has given both of them a huge boost - improved their mobility and energy levels enormously. It might be worth finding the post using the search engine (it was about 2 weeks ago I think) and finding out the name of this consultant if you ever want to query this change in diagnosis. Otherwise the very best of luck to you- hope your energy levels return 😊

fifi6 profile image
fifi6 in reply to

Thank you for your reply. Unfortunately I can't seem to find the post, would have been interesting to have read this post!! I hope your health improves soon, it's a long hard journey 🌻

in reply to fifi6

Just to add that I became an NRAS ambassador when I was misdiagnosed with RA six years ago so I do understand the feeling of being winded when you have learned a lot and feel part of a community - it feels very strange to have a diagnosis changed or taken away and you have my sympathy.

fifi6 profile image
fifi6 in reply to

Thank you for understanding. My family feel I should be relieved as I'm sure I should!! Will just take time to adjust and see if my symptoms progress but hopefully I shall just have to carry on dealing with fatigue... I'm not sure if I will still need blood tests, I have been going every 6 months to Rheumatology. Thank you again, keep well 😊

in reply to fifi6

Ps I found the relevant HU post about ME and Hydroxy for you from 17 days ago - link above. You could always PM this chap for more info.

fifi6 profile image
fifi6 in reply to

Thank you so much 😊 Will definitely pm him. I'm grateful for any advice.

I feel very confused.. I have reaad every book and literally spent hours researching Lupus! My daughter even trained and ran the London Marathon for Lupus this year!! So to be told by an Lupus Specialist that I do not have Lupus is almist upsetting in a strange way. I was hoping to find advice and help with my dreadful fatigue. I was even considering taking hydroxychloroquine for the fatigue if a Specialist recommended it. I have had blood tests at the London Bridge Hospital as Consultant thought this would be a good idea, so will wait for results.

I know I should be happy not to have Lupus but I now have raised antibodies and fatigue and there is no treatment 😞

in reply to fifi6

Could you look into primary Sjögren's perhaps? There is much symptom overlap - positive antibodies but not always Ro & La - fatigue is a main feature and other Sicca issues can be less dominating for some. Many are misdiagnosed with ME or Fibro and a Lupus specialist is not the same as a Sjögren's specialist - Dr Elizabeth Price in Swindon would see you privately or NHS for second opinion?

fifi6 profile image
fifi6 in reply to

I do actually have hashimoto's which I take medication for so perhaps this is causing symptoms for me and not treated optimally!! It's all so confusing. Perhaps I might email the Lupus Specialist and ask about sjogrens!! Thank you for your advice.

in reply to fifi6

I have Hashis too - also a very common secondary feature of Sjögren's! 🙄

fifi6 profile image
fifi6 in reply to

That's interesting will have a research 😊

vaderviper profile image
vaderviper in reply to fifi6

Unfortunately with lupus (if that is what you have) can cause unrelenting fatigue. Very often, no matter how much and what type of medications you take, the fatigue is overwhelming; it happens to be the number 1 complaint with patients suffering from lupus. Many other diseases cause terrible fatigue as well, i.e. fibromyalgia, chronic fatigue syndrome, certain cancers etc, etc. The list goes on and on.

I retired early due to my severe fatigue due to lupus. I could no longer practice Neuro-Ophthalmology..........very depressed 1st year or two. I was on Plaquenil, Cellcept and prednisone...all to no avail.

I wish you nothing but the best.

Dr. S. (in the USA)

What about fibromyalgia?

fifi6 profile image
fifi6 in reply to Exausted

Hi, yes it was in my list of possibilities but I'm lucky in that I do not have any pain anywhere so not really sure if it could be fibromyalgia 😙

First, let me say a positive ANA can mean nothing as many people show a positive ANA and have no autoimmune disease and conversely about 2-5% of people with lupus will have a negative ANA. Second there are 2 tests for lupus, dsDNA and the Ribosomal P antibody which is 100% SPECIFIC for lupus. The are multiple other blood tests for autoimmune disorders and i assume your Dr. performed the Ribosomal P antibody.

Dr. S (in the USA)

fifi6 profile image
fifi6 in reply to vaderviper

Thank you for your reply. I only seem to have had the ANA ELISA (ds,DNA,ENA and centromere) which was 1.4 range 0.0-0.9. Double Stranded DNA antibody ELISA which was 32 range 0-10. Are these tests conclusive of Lupus? I am waiting on tests taking from London Bridge Hospital at the moment. So very confused as I have had chronic fatigue for many years. To be told it's not Lupus is hard as I now do not understand why I suffer dreadful tiredness. Wishing you better health too, I sympathise with you as I too struggled working long hours.

All the tests you has were an indication you have lupus, however there is only 1 that is specific for lupus.............the Ribosomal P antibody. (maybe your Dr. wouldn't mind performing this test. Lupus can be a difficult disease to sometime diagnose...........I suffered for almost 6 years before finally getting a diagnosis. In the beginning I was frustrated with myself because I never even considered that I might have lupus (having 10 years of medical training and the disease never entered my mind). It wasn't until I mentioned my problems to a good friend of mine (she is a Rheumatologist) and after about 20 minutes of conversation she thought it was a possibility I may have lupus. After a multitude of blood tests, the vast majority came back positive for lupus.........many of my symptoms were diminished by immunosupressants and prednisone..........but nothing helped my fatigue.

Wishing you luck.

Dr. S.

I too was diagnosed 15 years ago and have severe doubts about whether the diagnosis is correct. You are fortunate that you have had the opportunity to review your diagnosis. I have queried my diagnosis in retrospect but have had no help from the Rheumatology Dept. They do not take kindly to someone querying the initial diagnosis.

fifi6 profile image
fifi6 in reply to floraD

I hope you can find some answers too, I wish I had seen a Lupus Specialist when I was first diagnosed!! I just had very bad fatigue and my blood tests for Lupus came back positive so I had no reason to doubt the doctors prognosis. I have spent the last 15 years researching and believing I had Lupus. I went to see a Specialist in London because my fatigue has become worse over the last few years and I wanted some advice and help. Luckily I have always refused medication (hydroxychloroquine) as I worry about the effect it may have on my eyes. The Specialist said I had antibodies which showed positive and fatigue but not enough symptoms to diagnose Lupus.

I will find out more on Monday as the Lupus Specialist did more specific blood tests. If it turns out not to be Lupus which he highly suspects then I do not really understand what is wrong with me!!! He did try to explain that you can suffer dreadful fatigue with raised antibodies but no specific symptoms leading to a diagnosis can occur in some people. All rather confusing but he is going to send a more detailed report explaining when blood tests are back.

I hope you are well and suffering no Symptoms!! It is difficult when there is no specific test.

floraD profile image
floraD in reply to fifi6

Thank you for your reply. Like you I have baulked at the idea of taking hydroxichloroquine. I'm interested to know about the specific blood tests you are undergoing. Here I find an air of complacency as if once you have been given a diagnosis there is no going back on that. Fatigue is a major problem for me and I have recently been diagnosed with a thyroid problem which can also contribute to fatigue. I hope your tests give some positive indications for you.


fifi6 profile image
fifi6 in reply to floraD

Hi FloraD, the Consultant has explained that the DNA antibodies that came back positive are associated with my autoimmune thyroid disease and the positive ANA just reflects this!! I had a Crithidia DNA test and ENA antibody tests which were all negative!!

I have always thought my fatigue was the Lupus because I have always been told my thyroid was under control. I now realise that I am obviously not medicated correctly for my hypothyroidism. All really frustrating but going to try and get to see a knowledgeable endocrinologist to see if they can help with this dreadful fatigue...good luck and I hope you get answers too.

You will have an autoimmune disease though if some sort, the anti body will be an indicator of what sort. X

Hi fifie6, I am new to this site or should say this is my first correspondence. I am 64 and have been ill since about or just after puberty. About a decade ago I was diagnosed with Lyme and last year Lupus by rheumatologist. He did state "by the old criteria" I fall under Lupus, these (OLD) same criteria are also Lyme co-infections. I have been studying both for the past 18 years to discover that many autoimmune diseases such as ms,parkinson's, on and on can be induced by Lyme. My sister is with Lyme induced scleroderma. You don't need a tick bite to get this.I would suggest that if there is a Lyme Literate doctor in your neck of the woods to have her/him check you out.Their acronym is LLMD

fifi6 profile image
fifi6 in reply to Ihope2

Hi Ihope2, so sorry for the delay in replying. This is very interesting I shall definitely look into this. I hope you are feeling well.


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