Written by Silvia Collins


Why I’m in denial about my lupus diagnosis

When the usually sprightly Silvia Collins started getting weird aches and pains, she had no idea what was happening – or indeed WTF lupus was.

Magnified immune system image

About three years ago I started getting weird pains. Mainly in my hands and wrists, but sometimes in my shoulders and knees too. It was a sudden shooting/stabbing pain, with an afterglow a bit like toothache. It would wake me in the night and have me reaching for the painkillers. I was swallowing ibuprofen at 5am and then topping up throughout the day. It was relentless.

After a couple of weeks with no sign of improvement, I took myself to the doctor. Who was no help. “Keep taking the ibuprofen and come back in two weeks if it hasn’t improved.” It didn’t. In fact it was like Groundhog Day: I’d wake each day at 5am with alien claw-like protuberances. The pain left me in tears and my hands and wrists were swollen and inflamed. I lost all the strength in my fingers and struggled to unscrew the lids off jars or bottles. I lived in a fog of pain and sleepless nights. I lost weight and the ability to concentrate on anything but the pain. I started bulk-buying 400mg of ibuprofen in boxes of 96. It was pretty terrifying not knowing what the hell was going on with my only 41-year-old body.

“Lupus is often referred to as the great imitator because, like some sort of screwed-up myna bird, it’s a canny mimic of other diseases.”

After six weeks, I was referred to a rheumatologist. Professor Magonagle was very thorough and tested me for rheumatoid arthritis, lupus, Sjögren’s syndrome and Raynaud’s. I tested positive for all of them. I already have hypothyroidism (underactive thyroid) which I’ve managed for the last 20 years with no problems. Turns out, I also have an overlapping mix of rheumatoid arthritis and lupus, commonly called rhupus. At least now they knew what it was, it could be treated, right?

Hmm, kind of. There are many kinds of lupus. The most common type is SLE (systemic lupus erythematosus) where the body’s immune system mistakenly attacks healthy tissue. Basically my body was attacking itself: in my case it was the synovial fluid around my joints, but scarily, SLE can attack anywhere in the body – the heart, joints, skin, lungs, liver, kidneys and nervous system. Lupus is often referred to as the great imitator because, like some sort of screwed-up myna bird, it’s a canny mimic of other diseases.

Lupus is also an unpredictable beast, with periods of illness (flares) alternating with remissions. It occurs nine times more often in women than in men, especially in women in their childbearing years aged 15 to 35, and is also more common in those of non-European descent. There is no cure, but there are ways to keep it under control.

One of them being Hydroxychloroquine, an anti-malaria drug that reduces the activity of the overactive immune system and which I was prescribed; what’s more, it affects the underlying disease process rather than simply treating the symptoms.

“My eyes and lips swelled up and I developed an itchy red rash that joined up into giant hives all over my body. Imagine a flea-ridden dog that’s just rolled in itching powder.”

The list of possible side effects was quite bizarre – hair loss/colour change (I quite fancied going blonde; wasn’t so keen on going bald); mental/mood changes, including psychosis, hallucinations and vision changes – but I figured it was worth the risk. What the drug could do made sense to me, and I trusted my rheumatologist, so was keen to get started.

My immune system did not react well. Rather than suppressing its activity, the medication was akin to squirting lighter fluid on a bonfire. I suffered a severe allergic reaction, which made everything 10 times worse. My eyes and lips swelled up and I developed an itchy red rash that joined up into giant hives all over my body. Imagine a flea-ridden dog that’s just rolled in itching powder – it wasn’t pleasant. I became a calamine-lotioned insomniac and didn’t leave the house for five days. Oh, and I stopped taking the drug.

After a couple of anxious calls to NHS Direct, I was prescribed a steroid called Prednisolone, which suppresses the body’s immune system and reduces swelling and inflammation. Joy of joy, the hives disappeared. But the constant searing pain and claw-like hands remained.

My salvation from lupus was a cortisone injection in my arse. It was pretty much a miracle – or at least it felt that way to a knackered, depressed me. Thirty-six hours after having it done I was pain-free, after four months of hell. It was like I’d been dipped in the healing waters of Lourdes.

The downside was being told the injection would only last three months. My rheumatologist monitored me and wanted to put me on a new course of drug treatment – one that is often prescribed to cancer sufferers. Being much wiser to the possible side effects and pain-free for the time being, I weighed up the options and decided to hold off.

Three years on and I’m still in remission. I still see my rheumatologist as an outpatient, but I haven’t had another cortisone injection and I don’t take any drugs to manage my condition. My diagnosis was a massive wake-up call, though, and I’ve overhauled my lifestyle: I quit smoking, took up yoga and Pilates and started running. I did my first marathon last year.

I still get rather anxious when my joints start aching, and worry that I may suffer another relapse, but I refuse to be a lupus sufferer. I’d rather be a lupus denier. So far, it’s working out.

Sunday 10 May is World Lupus Day. More than five million people worldwide are affected by lupus. For more info, visit: www.lupusuk.org.uk

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Written by Silvia Collins

Silvia Collins is an animal lover, Scrabble geek and running nerd still chasing that pot of gold at the end of the rainbow.