My story is on this website and if you’ve read it you will know that it took me over 4 years to get a diagnosis of lupus. In the end it was sheer luck that my GP got fed up of seeing me and referred me to a rheumatologist, who happened to be Professor David D’Cruz (a rheumatologist with a special interest in lupus, now at the Louise Coote Lupus Unit, London).
It was over 20 years ago so there was no internet and no way of me looking up my symptoms as there is now. There was even less awareness of lupus and no programmes like House where at least it gets a brief mention, I’d never even heard the word lupus let alone had an inkling that I might actually have it.
What I did know, is that something was wrong with me, I was a very fit person, on the go all the time and I’d never visit a doctor unless I was dragged kicking and screaming there. So why didn’t it occur to my GP that I might actually be ill? Instead after me visiting once a week over a long period of time he leaned across the desk and said ‘you might consider some counselling dear!’ In other words it was all in my mind and that’s where the difficulty in diagnosing some illnesses lies – the patient doesn’t look sick. However, we know our own bodies and know when something isn’t ‘normal’ for us. So if someone never visits their GP but then suddenly starts to practically live in their surgery, alarm bells should ring and it shouldn’t immediately assumed that the patient is being a hypochondriac.
It’s now believed to be an average of 6 years for a diagnosis of lupus from the first symptoms, which is shocking.
So if someone contacts me and feels they are being fobbed off or not listened to (and this amounts to a lot of people!) but they know there’s something clearly wrong, I tell them persistence is the key. Had I know then what I know now, I would have absolutely insisted that the doctor listened and stopped trying to tell me there was nothing physically wrong with me just because I looked well.
The American College of Rheumatology developed 11 criteria for lupus, these are useful if someone is not sure if they might have lupus. It’s certainly a good place to start and a possible indicator of whether you might indeed have lupus.
You shouldn’t rely solely on the list, you must consult your doctor who should then refer you to a specialist (usually a rheumatologist). This is the list:
- Malar rash: butterfly-shaped rash across cheeks and nose
- Discoid (skin) rash: raised red patches
- Photosensitivity: skin rash as result of unusual reaction to sunlight
- Mouth or nose ulcers: usually painless
- Arthritis (nonerosive): in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
- Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
- Neurologic disorder: seizures and/or psychosis
- Renal (kidney) disorder: excessive protein in the urine, or cellular casts in a urinanalysis
- Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
- Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
- Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. However, a positive ANA test does not necessarily mean you have lupus.
Tests for lupus can be found here , there is no one definitive blood test, so your rheumatologist will also take a detailed medical history. It’s vital that if you fit more than 4 of the criteria and think you may have lupus you should ask for a referral to a rheumatologist. As I said before lupus is a very difficult illness to diagnose even for a specialist so, in the vast majority of cases, it’s unlikely that a GP will be able to do this and may rely on blood tests alone which aren’t enough and in a small number of cases can even show false negative.
If you, or someone you know have 4 or more criteria it is definitely worth contacting your GP and asking for a referral to a specialist, even if it is just to rule lupus out. The outcome for a patient often depends on how quickly they get diagnosed and treated, so signs such as the ones above should not be ignored. Also, as I always say, if you are in pain you need to get to the bottom of it, whether it’s lupus or not, you need to know why you are in pain and shouldn’t just put up with it.