Morning Lupies.

I have noticed lots of people on here mentioning Infant Onset Lupus which wasn't diagnosed till much later in life. Excuse my ignorance, but how do you know it was infant onset and how/who told you? I'm very interested in finding out more about this as I have felt I have been ill, on and off, all my life.

I got a diagnoses of Lupus in the spring, age 49.


3 Replies

  • I started to become ill when I was 12 and by the age of 15 I was showing many of the symptoms I now recognize as lupus (skin rashes, inflamed joints, chronic fatigue, random pain etc. I was told I probably had ME when I was 17 and then I diagnosed myself with lupus following several miscarriages and a great deal of Internet searching in my 30's. After a battle with GP's and finally paying to see a rheumatologist privately I had lupus firmly diagnosed last year at the age of 37. Now the treatment has made me more ill than the disease ever had so far and I've had to get a second opinion regarding treatment! You have to laugh, don't you!?!

    I don't know whether I would have always met the criteria for having lupus if they'd have properly looked at me sooner but my symptoms were very similar so I consider lupus to have been with me since childhood.

    Best wishes!


  • Hello Alison. Here is my infant onset lupus story in a nutshell (hopefully):

    -My lifetime has consisted of progressively worsening multisystem symptoms (cumulative disease activity) gradually being diagnosed relative to what I now know are secondary conditions (raynauds, neuropathies, spondylosis etc etc)

    -in the '70s (when I was 21 onwards) I moved from the USA to the uk, without taking my medical records

    -By my 50s my general condition was so debilitated and visually alarming that my pain consultant got me referred to immunology for investigations re a primary underlying autoimmune dysfunction - this was in 2010

    -When my mother asked down the telephone line what I was being tested for, I looked on the bloods form & the only recognisable word was lupus (which I'd never ever heard of at all). She said: but, dear, you've always had lupus. Turns out I'd been diagnosed as an infant, and treated during flares until I left home @21, but ma kept the diagnosis a secret. She thought lupus was sort of like having bad rashes & the flu now & then. To this day, I don't quite understand what possessed her, but she is a maverick....and in the '50-70s I suppose relatively mild lupus cases could've been handled this way? I can only thank her for being here on earth to reveal this. And also for raising me to conscientiously lifestyle manage my health issues.

    -i was lucky enough to be referred to a top NHS lupus clinic in 2011, where the head of clinic spent 2 hours taking my full medical history (I'd prepared for this thank goodness), giving me a thorough physical examination & taking blood samples. That day, I was diagnosed with SLE provisionally and started on hydroxy, even without blood results. I was told my mother's evidence is convincing. And that it's probable my infant onset lupus was mainly due to my mother being prescribed the notorious artificial oestrogen DES (stilboestrerol) to prevent miscarriage, thus exposing me in utero to high daily doses of this ghastly drug

    -in the years since systemic lupus treatment began, my pos response to daily lupus meds has been dramatic (am now on daily hydroxy + myco + pred + amitrip)....thanks to treatment I'm feeling better than I have since my 20s, which lends even more credence to my mother's story, there is no cause to doubt she is telling the truth, and the progressed nature of my multisystem debilitation fits perfectly (the cumulative disease damage), as do certain consistent trends in my blood test results e.g. Low complements & lymphocytes

    Hope this is the sort of info you're looking for

    🍀🌻 coco

  • I was told by my rheumatologist that it was likely that I'd had lupus/primary sjogrens since early childhood (debatable which illness - been told various things, currently it's PSS!). I was a poorly little child who frequently had swollen glands and eventually had my tonsils removed which helped to an extent. Carried on having unexplained aches and pains though until I was 16 when I got really sick with bad joint pain and swelling, fevers, serious anaemia and eventually kidney and liver failure and was in hospital for quite a while. I was told this was juvenile arthritis at the time (early/mid-80s) but in hindsight it was clearly lupus as there was no joint damage and the pain and swelling 'flitted' from joint to joint. This disease was treated with prednisolone for a few years and by high doses of aspirin and I was supposedly 'cured' by my early 20s. Thought no more about it until I was in my mid-30s and had gynae problems and miscarriages and was told at this point that I had SLE and APS. Again, no other especially troublesome symptoms (other issues going on though such as endo, appendicitis, coccydynia - not sure if related or not). Then just past the age of 41 I had a huge flare and could barely walk and was very poorly again. Since then, a whole host of symptoms and was diagnosed with Sjogrens in 2012 aged 46 and more symptoms seem to be joining the party year on year. What's your particular story Alison?

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