How do you get diagnosed with lupus?

[TJ2097]

I have the majority of symptoms associated with lupus as well the genetic history even having several student drs suggest it as a possible cause.

However even after seven years & developing more symptoms associated with lupus I can’t seem to get anyone to look further into it due to a lack of inflammatory marker.

We’ve ruled out many other illnesses including other rheumatological illnesses & neurological illnesses that run in the family.

It’s been 7yrs & I keep getting stuck at the this same point where no one will do anything without that marker so I’m not sure what I can do.

[Suvi8901]

Hi,

“can’t seem to get anyone to look further into it due to a lack of inflammatory marker.”

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Not sure what you mean by this?🧐

[TJ2097 in reply to Suvi8901]

Sorry I should’ve been more specific, I have a normal CRP result (C-reactive protein) so my rheumatologist isn’t willing to do further testing even though many lupus patients have normal results with this test.

[Betty909090]

This may help:lupusuk.org.uk/wp-content/u...

[KayHimm]

All the systemic autoimmune diseases are diagnosed by clinical exam and other diagnostic tests like you mentioned. It would be hard to say the rheumatologist didn’t look into it further. Examining your joints, checking for rashes and listening with the stethoscope are all important. They use that information and history to know what further testing to do. Do you know what tests you had in addition to the CPR? What caused you get referred to the rheumatologist? Did your GP do initial testing maybe?

There is no one marked for lupus. If you know what testing you have had, we may be able to understand your dilemma better. CPR is very general and would only indicate whether there is a high level of inflammation. True, many of us have had periods of negative CPR tests and ESR tests even when we feel unwell.

Hope we can help.

K

[Alida_Bennett Partner LUPUS UK]

Dear TJ2097

I am sorry you are having such a difficult journey in reaching a diagnosis for your symptoms.

I have added below links to our publications relating to diagnosis and symptoms, as well as a link to our blog article which gives advice in relation to how you can get the most from your medical appointments, as well as details about how you can request a second opinion, if this is something that you feel you would like to do.

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/getting-the-...

I do hope the above is helpful and you are able to reach a diagnosis in the near future.

If I can help further, do please let me know.

Kind regards

Alida

[chrisj]

A locum sent me off the blood tests as the regular gps hadn't got around to it. I'd been unwell for some time and treated without a proper diagnosis. Long story but I won't get into that.

I had to go the the docs for a medical note and saw what I thought was a new doctor, he was a locum and wanted to know why the blood tests hadn't been done. I shrugged I had no idea so he sent for an urgent appointment in what turned out to be with rheumatology. 2 weeks later the test was done, I went back for results to be told it was positive for SLE. It showed an ANA positive result, thats what confirmed it for me.

I'd never heard of Lupus but was reassured it wasn't life threatening as it was mild SLE and finally I had the correct drug prescibed..plaquenil. Thats all I can tell you really. If you're not testing positive there must be something else going on??

A nurse did tell me that inflammatory markers in my blood tests were always up but not enough to cause concern. 2 or 3 years ago a rheumatologist I hadn't seen before said Lupus wasn't showing in results and hadn't been for some time, she wanted me off plaquenil and sent me off for a thorough sight test. Thankfully all was well. If not for her I might still be taking the drug now. I've been stable for some time.

I do hope you can get some answers xx

[chrisj in reply to chrisj]

lupusresearch.org/understan...

a link I found just now might be helpful.

[StriatedCaracara]

CRP can be normal. Locum GP said mine was nice and low so not autoimmune.

I phoned local immunology dept, that do the blood tests for Health Authority I'm in, and they said I needed ANA test. Said if GP would not do, may need to change GP. I asked twice - different person in the practice second time - got the test (yippee)

This came back moderately high and GP surgery opinion swung over dramatically and they referred. I then educated them saying 'never use CRP' - it is for inflammation due to infection, not auto-immune disease. Shame we have to educate them when they have been through medical school ...

[TJ2097 in reply to StriatedCaracara]

Hopefully I can request ANA tests when I’m next there, it’s silly how often they’d rather kept repeating basic bloods than do specialist testing.