LUPUS UK
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How did you know?

Hi there. I'm hoping you guys might be able to help me a bit.

I'm currently diagnosed with 2 AI conditions (thyroid and Palindromic Rheumatism), but I'm starting to worry that either my most recent diagnosis (PR) is wrong or that there's something more going on as well. I'm getting symptoms which don't seem to fit with either or that have come on at the wrong time (some of the thing could be thyroid related, but have come on after a long time of stable levels so it seems unlikely).

None of it is terribly concerning and if it were just one thing I'd probably just leave it to bad luck or some odd little thing, but where it's multiple things and it seems to be building I'm concerned there may be another AI condition hiding in the shadows. It's the sort of thing I would really like to know about asap cos then I have better chances of avoiding more urgent issues and generally preparing myself.

Despite going through it twice now I'm still not terribly confident with the whole suggesting things to doctors so I'm kinda hoping to get a bit of motivation and maybe some advice.

I was wondering how it was you knew something was up and how your diagnosis came about?

I'm asking here cos Lupus is what keeps appearing when I look into things and it's one of the better "advertised" AI conditions so of all the many AI conditions it seems to be a good one to use as a base.

Thanks a lot for any responses

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Hi there. Well I have Sjögren’s and Hashimoto’s but was initially diagnosed with post viral arthritis and then RA. Now it is thought that Sjögren’s can imitate RA and SLE pretty efficiently.

The way it went for me was that my GP suspected RA from the bilateral joint pain, raised Rheumatoid Factor and high ESR and CRP but it still took 8 months from suspicion of RA to diagnosis. Then, 5 years on, it was imitating MS so I had lumbar puncture, brain MRI, relocated several times, decided it had been Sjögren’s all along for myself, got under neurology and rheumatology in a new hospital, found my ANA was positive, got lip biopsy and bingo - 100% Sjögren’s.

I have to admit now to you that life was much more straightforward with RA as my main diagnosis. Sjögren’s has been a nightmare so far. No one has heard of it - and most health professionals don’t really understand the full systemic implications of it. I often tell people I have MS or Lupus just because I often have facial rashes and walk with a wobbly gait and it at least gets a nod of recognition. Many more people have heard of MS and Lupus than Sjögren’s and those who have heard of Sjögren’s invariably only know about the dry eyes and mouth or worse still, think of Venus Williams🙄🤯😎

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Ps just read an earlier post of yours on NRAS - a letter from a doctor to patients with chronic illnesses. I think, if you possibly can, follow her advice and see a doctor whom you know already to be quite approachable, and explain to them what you have explained here to us.

You don’t have to go in all guns blazing to be taken seriously - just look them straight in the eye and tell them that, if possible you would like a second opinion on PR diagnosis, and explain why (A4 page with list of related history and most relevant symptoms to give them). All done with a friendly smile and an appealing question mark, conveying the very human need for clarity🤷‍♀️

After all PR is rare and sometimes thought of RA with a faulty starter motor. So I’m sure it could equally be Lupus, Sjögren’s or PsA with a faulty starter motor? I have often thought my RA was probably PR.

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PR brings many different symptoms. All you can do is keep in contact with your rheumatologist & follow his/her advice.

I was diagnosed with Palindromic Arthritis 20 years ago, & after two years it progressed to Sero+ RA....(I have no Thyroid problem)

The RA has been well controlled over the years with many Dmards, I have only ever taken one at a time.....& I haven't developed any other AI condition or symptoms.....now I seem to be in a type of remission on Rituximab.

So just try to see your rheumatologist regularly & keep a note of any symptoms you feel need addressing.

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My father who is in his late 70's was diagnosed with RA based on antibodies, clinical picture and radiographic evidence. His rheumy (who used to be mine too until I dispensed with her services) then decided a few years ago that he had PR instead but quite why and based on what evidence baffles me as his condition had worsened and he was being left with permanent damage to eyes and joints. He's now back to having an RA diagnosis. There are such fine lines between all these AI conditions.

I wondered for quite a while if perhaps I had PR - a long history of intermittent, flitting, non- erosive joint pain, redness and swelling but my CRP was never raised and my RF & and CCP antibodies are negative. I've since read on a UK lupus FB group that my flitting joint issues are highly typical of Lupus but quite probably the presentation can be very similar. I agree that it is hard to get rheumys to look at the bigger picture once you have a dx. I suspect I have sjogrens too but my rheumy isn't remotely interested in diagnosing it as I'm apparently on the right treatment already. . .. You sound as though your treatment isn't effective enough if you are having new symptoms so I guess this is the starting point for discussion? X

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Hi, I was diagnosed with undifferentiated inflammatory arthritis for about five years prior to my sle diagnosis, my current doctor is now lookin at radiation again as well although I've never had a positive test again. Oh and I have secondary sjogrens syndrome as well.

My main message to you is that these autoimmune diseases are tricky devils, they all imitate each other.

The best thing you can hope for is a consultant who will work intuitively with you to treat your particular presentation, who is not too preoccupied with standard protocols. Not always easy to find!

Even within the SLE diagnosis there are as many different presentations as people!

Good luck, I hope you get the answers that you need.

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Hi BubbleMonkey,

Welcome to the LUPUS UK HealthUnlocked Community!

To better understand the symptoms associated with lupus, I would suggest looking at our ‘symptoms’ page on our website lupusuk.org.uk/the-symptoms/

If you would like to be tested for lupus, please read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

We offer a free information pack which you may like to take along with you to your next appointment or when requesting a test for lupus. To download or request the pack, click here: lupusuk.org.uk/request-info...

Please let us know how you get on, all the best.

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Okay so quick update. I managed to get a super quick appt with a GP cos there were cancellations. I was pretty sceptical cos I hadn't seen them before and I'm used to not being taken seriously about how I feel. It went super well though. I guess maybe now that I have 2 AI diagnosiesesese (I hate plurals for s words) it kinda shows that yeah I am ill so it's easier to skip straight to the how I'm ill and all that.

So anyway I've just had some blood tests done and I'm waiting for the results then I'll talk to a GP again (hopefully that same one) and once we've got a little more direction I'll head back to see my rheumy.

So yeah things are looking good so far. GP agrees that my symptoms are pretty widespread so hopefully rheumy will also agree and we'll all be on team "work out what the hells going on" together and I won't have to push loads. :)

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I realised in 2016 it was lupus but it was a huge ongoing battle to be listened too but got my definitive diagnosis 2weeks ago , I knew because like you I matched the clinical criteria I think I had everything except 2 or 3 symptoms x good luck and keep fighting x

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