Is this lupus?

[Foodwithfriends83]

Hi, I'm just into my sixties and have developed symptoms that are tempting to pigeonhole "getting older" or menopause, but I don't think that they are. I do know though that the flare ups became much worse following a viral infection Feb 2020 (maybe covid?). I also reacted dramatically to the astra zeneca covid jabs but coped fine with the moderna booster. Until my fifties I could walk or cycle very long distances, carrying a heavy rucksack and be fine. This was the first change there'd be occasions when I'd feel unwell if I did anything whatsoever. Other times I'd be fine. Nowadays I'm mostly not ok even with a short walk. My heart races and head aches. I get migraines for which I take propanolol. I feel sickly. My joints ache, my fingers swell like sausages. I get a facial rash like roscaia. I'd say that I cannot stand light, and I'm so much happier in the dark. My pupils also seem smaller during a flare up. I've had an MRI and that was all clear.

When I'm walking, even in the summertime, I have a nasal drip and my eyes water alot. It returns to normal as soon as I rest.

I feel cold at my hands and feet during exercise. In fact, the only way I can recover from exercise is often a hot bath.

And I developed a severe food intolerance which was so bad that I just couldn't eat more than a few mouthfuls without symptoms. I lost 2 stone in just a few months. Tests showed all clear. That has improved significantly but flares up now and again.

I've had various blood tests and nothing seems to show up. My GP has just agreed to test for autoimmune markers because I explained that it feels as if my body is fighting itself. But the tests are next week.

There are a few close family members with autoimmune conditions. Diabetes type 1, giant cell artiritis and rheumatoid arthritis. No one, as far as I am aware with lupus though.

Any advice would be very welcomed.

[RosieA]

AH! Yes, I do fear that as older women we can easily be fobbed off with sudden onset ageing. It is good that your GP has agreed to do the Autoimmune screening. I was lucky in that my GP sent me straight to Rheumatology after bloods and what appeared to be inflammatory arthritis. It turned out I had late onset connective tissue disease. Like yourself I have a family history of autoimmune disease and mine was certainly triggered by my first bout of flu. I was in my late 50s. Good luck and I hope you find the cause of all your symptoms. Do let us know how you do, if you feel able.

[marypw]

I was diagnosed 13 years ago by my GP - I had aches and pains everywhere, plus severe fatigue. I couldn’t do the things that friends the same age could do. I was 55 so thought she might just say lose weight and get some exercise, but she was an experienced GP who had a trainee with her, so I got properly investigated. Please don’t get fobbed off by anyone saying it’s your age or menopause-related! Good luck.

[StriatedCaracara]

I was diagnosed in my early 60s after some symptoms started in my 50s.

Covid infection early in the pandemic, before vaccination available, may have helped to progress things.

I was diagnosed with Undifferentiated Connective Tissue Disorder (UCTD) sometimes called 'Lupus Spectrum Disorder' in the end.

[OldTed60]

For me swine flu or a bout of nasty gastroenteritis in 2010 were catalyst to inflammatory arthritis which suddenly arrived out of the blue early in 2011 when I was 48. I initially blamed my menopause, then my gp explained that I was already an autoimmuner with hypothyroidism. I hadn’t heard of autoimmune disease except for HIV/ AIDS so was quite shocked. Later came Sjogren’s with symptoms very like the ones you describe. My immunology blood wasn’t helpful so it was seronegative. Now I’m diagnosed definitively with systemic sclerosis for which I carry an unusual antibody. It’s taken 12 years to get diagnosed correctly. Sometimes things are not black and white in rheumatology and there are overlap syndromes such as UCTD and MCTD or Lupus and Sjogren’s or scleroderma and Sjogren’s. I hope you’re one of the luckier ones who has clear blood markers to aid a speedy diagnosis. I do now but these weren’t actually tested at the time because they only looked for RA (rheumatoid factor and anti ccp antibody). By the time they started looking for lupus, Sjogren’s etc I was already on steroids and methotrexate - which masked things. Best of luck to you and my only advice would be to try and keep an open mind as there are many others and overlap syndromes which could explain your symptoms eg Vasculitis, scleroderma, Sjogren’s etc x

[StriatedCaracara in reply to OldTed60]

It could have been Swine Flu with me too.

[OldTed60 in reply to StriatedCaracara]

I think some of us are predisposed to autoimmune diseases - whether from infant illness or genetics. So I couldn’t vouch for the swine flu as trigger nor the terrible gastroenteritis because I was already an autoimmuner unawares. As a child I had autoimmune hairloss and then hidradenitis suppurativa as a teen. So I was already a marked card and the triggers at that point in my life could have been anything really. I was also going through menopause at the time and had just suffered a bereavement at the time so who knows!

[Treetop33]

Ah yes many of us have been through that. I was finally diagnosed in my early 50s. Insist on getting tested for autoimmune markers. Your family history and symptoms should be a big red flag. It may not be lupus, but many autoimmune conditions are quite similar anyway. Good luck! x

[roby1988]

Hi! Going through similar process as you (I am 36 now)-my ANA and ENA tests are negative since two and half year ago. I had sever reaction to the sun this year 9all over my body), later on I developed joint pain, dry eyes, also chronic fatigue, small reoccurring fevers (36.9-37.1), my feet are cold all the time (only when I am in a warm space then no). My rheumatologist said that I have evolving connective tissues disorder (CTD) (e.g lupus) so he already put me on hydroxychloroquine and I feel much better (like 90% old me). My dad has rheumatic arthritis and my cousin, from his side, Raynoud. It is good you will get tested and I am sure GP will be helpful. I wish you good luck.

[nottypical]

The immune system markers are used to define Lupus. Rupert Harwood at Swansea University is doing a paper on Lupus diagnosis which generally seems to be a convoluted path.

[MusicalFurbaby]

I went through a similar thing, not so much with age (diagnosed at 33) but with menopausal symptoms. I’m currently 43 and a lot of lupus symptoms overlap with signs of menopause, unfortunately, so it can get a bit muddy. It can be so hard when many lupus things overlap with so many other things! From what you’ve said, though, you have genuine stuff going on, so try not to second-guess yourself. Trust what your body is telling you, even when other people doubt you! We’re here for you, so please do keep us posted on what happens.

[0936725]

I have exactly the same symptoms from having ?covid? Mar20 and AZ vaccine Apr21 completely floored me. Like you say it’s as if the body is fighting itself. All tests negative, ANA+ briefly, consultants say it’s the vaccine. Long covid clinic is my only hope (many there with same symptoms) Aged 52: Left to bed rest still after a full & active life before running my own business, now I can’t hold a conversation on the phone (or physically hold up the phone to my ear) Staying positive helps, I hope you have support.

I hope you get better luck, we have to keep fighting this…