The Interloper’s arrival is confirmed.

Mags was on the train, going to see a rheumatologist. Her No.1 Son would be meeting her at the station. He was to be her ‘secretary’, another pair of listening ears. She didn’t trust herself to remember everything. In her bag was her 2-page list of symptoms, with their dates of onset. The list spanned the past 30 years of her life. A few months previously, Mags had shown her list to one of the GPs in her practice. She had sought advice about her continuing morning cough. The doctor had skimmed down the list, pronouncing Mags to be “anxious and depressed”, telling her she’d benefit from a course of anti-depressants. Mags had burst into tears of frustration, thus confirming the diagnosis in her GP’s eyes. Mags had butterflies in her stomach. She wondered if all her symptoms would be dismissed again, or whether this consultation would be different. She was thankful to have moral support.

The rheumatologist greeted Mags kindly, read her GP’s letter, checked all the recent blood results, asked her many questions, making notes as he went. She needn’t have been fearful. After reading through her list, this doctor confirmed that almost all were due to Sjogren’s.

“Yes, this is Sjogren’s. Yes, and this. Yes. This too. Yes.”

Mags was amazed. This was a contrast to other consultations. These things that other people had dismissed were being validated.

There followed more careful questioning.

“Now, I’d like to do the Schirmer’s test,” he said.

He hooked little strips of paper over Mags’ lower eyelids. She found them uncomfortably irritating. Noticing this, he quite soon said,

“Ah. I see you have barely any tear production. I won’t leave them in for the full time. It’s uncomfortable for you.”

“Now, hold out your hands.”

He turned them over carefully, noting signs of arthritis.

“OK. I’ll listen to your chest now.”

Mags pulled her jumper up over her back. She breathed in and out deeply as instructed. It provoked her cough.

“Yes, you have bi-basal crackles. That’s typical. Probably due to inspissation.”

He explained that means the normal mucous secretions that we all produce had become dry and more thickened than in people without Sjogren’s and therefore required extra coughing to move it up and out.

“At last, after about 10 years, an explanation for my regular morning cough. How exciting,” Mags thought.

As she sat back down, she checked that No.1 Son was making notes on his phone. He was tapping away at speed. He was cerftainly earning his lunch.

“Right. There’s no doubt in my mind you have Sjogren’s. But the good news is that your blood results are not showing any Ro/La antibodies, so you’re less likely to develop lymphoma.”

That sounded good to Mags.

He went on.

“We could do a lip biopsy, which used to be the gold standard test for Sjogren’s, but if it happens to pick up a bit of tissue with not much inflammation in it, it’ll be reported as negative. It’s not 100% reliable. Given what I can see of your symptoms, and my certainty that this is Sjogren’s, a lip biopsy wouldn’t alter what I suggest we do.”

Mags was relieved.

He continued,

“You’ll need to set up some self-management techniques, for example, more frequent use of preservative-free eye drops during the day, and a twice daily heated eye mask for ten minutes, such as the one made by Optase. It’s good quality, quite reasonably priced. This will help stimulate your Meibomian glands in your eyelids. They normally produce an oily secretion which mixes with your tears and stops them evaporating too quickly. But in Sjogren’s, the oily secretion becomes sticky, and needs some encouragement. An Optase eyelid spray might help as well. It’s good that you’re already taking fish oil supplements. That can help with dry eyes.”

He went on.

“And I see you’re already using Xylimelts overnight for your dry mouth. Good. Xylitol is helpful to combat tooth decay. You’ll not be producing a normal amount of saliva. Chewing sugar-free gum with xylitol is helpful as well and sipping water regularly. And minimise sugar intake. Ask your dentist to prescribe toothpaste with a high fluoride content. That’ll help preserve the enamel on your teeth, and combat decay.”

There was more.

“I’ll ask your GP if he would agree to prescribing Carbocisteine for your cough. That’ll loosen the mucous secretions in your lungs and make it easier to cough them up. And it’s well worth considering Hydroxychloroquine. It can help with the fatigue and brain fog, and joint and muscle pains, although it’ll take a while to kick in, but it can slowly improve things. Most people don’t have side effects. It’s a safe drug. It’s been around a long time. You’ll need to have the special OCT eye scan done within twelve months of starting hydroxychloroquine. Some opticians offer this service, otherwise it would need to be an ophthalmologist at the hospital. The scan will check the condition of the back of your eye. Some people can develop a problem, in which case you’d have to stop the hydroxychloroquine. But it’s quite a low percentage. You’ll need this carried out after five years, then again yearly if everything looks fine.”

He yet more to say. No.1 Son was tapping his screen with intense concentration.

“Also consider taking Pilocarpine to stimulate salivary production, although some people can’t tolerate the side-effects. It can help to start it with a very low dose and build up gradually. The side effects do lessen over time. I’ll write to your GP and send you a copy for your records. Do you have any questions?”

Mags was dazed. Her brain wouldn’t work. She looked over to No.1 Son.

“Do you have all that?”

They laughed.

The rheumatologist said,

“E-mail my secretary if you have any questions, and I’ll do my best to help. Take it slowly, one thing at a time. There’s a lot to take in. Good luck.”

Mags thanked him, and they left.

Sitting on the train home, having had a satisfying lunch with No.1 Son before he headed home, Mags read through the notes he had made for her. She felt bewildered. On one hand she had an over-powering sense of relief. Relief that her symptoms hadn’t been dismissed. That she had been heard. Relief that she was not making a fuss about nothing, as other doctors had implied over many years. Relief that there was an explanation for her chronic cough. So much now made sense to her. On the other hand, the rheumatologist had confirmed that she did indeed have a chronic disease for which there is no known cure. There was a vast amount of information to process. It felt over-whelming. She wondered how she would ever manage to come to terms with it all.

Later, as she sat in bed, Mags recalled No.1 Son reminding her she had many new ideas to absorb. He too suggested she took one thing at a time, to be gentle on herself. Nevertheless, she couldn’t resist a peek at ‘Dr.Google’, even although she knew how risky this could be. On this occasion, she was fortunate to find some helpful websites. There was the BSSA (British Sjogren’s Syndrome Association), Versus Arthritis UK and the Sjogren’s Foundation in the USA. She would join these charities tomorrow. She also discovered a widely supported community of Sjogren’s people on a website called Smart Patients. They seemed to discuss absolutely anything and everything about Sjogren’s. There was the Sjogren’s Advocate website in the USA to steer her through how to get the best possible care, bulging with information and links to research. There was a great deal of reading to be done and much to learn. The best thing was she could see she was far from alone, even if none of her family or friends had ever heard of Sjogren’s. She was able to go to sleep feeling that today had been a positive day.