Still Pain

I’m sure you’ve experienced it before.

You wait months for an appointment with a specialist, then an hour or more in the waiting room. But less than 10 minutes after you are shuffled into the doctor’s room, your appointment is over.

Perhaps you leave with a few (new) prescriptions, and a little encouragement to ‘be more active’ or ‘try to relax’.

Having several chronic illnesses that required years to get a diagnosis, I’m more than experienced in this.

There is not enough time taken to explore your entire health history, or the overview and interactions of your chronic conditions and medications.

Your concerns aren’t listened to, or are dismissed with an ‘I am a doctor, and I know better’ attitude.

You feel like you are on a conveyor belt, to be seen and ‘treated’ with as little time, thought and effort as possible.

I’ve had this happen a lot in the last few months, most recently this week.

Warning, long rant post ahead!

I should say, not all doctors are like this.

When you get a doctor who takes their time, considers your entire health background and talks with other specialists, hang on to them - they are worth their weight in gold!

Allergies disregarded

In February I had concerns with sulfasalazine. I mentioned it’s very close to aspirin, and I’m allergic to salicylic acid, both internally and topically. The doctors said it was perfectly safe for me, and no where near close enough to aspirin to cause any reaction.

Turned out it was too close, and the allergic reaction appeared when I started on the full dose. I had my eye out, and luckily caught it early.

Not reading correspondence and results

I always prepare results and letters from other doctors, and where necessary my pain diary. Most doctors flip through them before the appointment. This time, not so much.

The rheumatologist was surprised that my GP had started me on methotrexate (MTX) because that’s a rheumatologist’s domain. Until I mentioned the hospital had requested it in their release letter (in front of him), and pointed him to the regular blood test results done by the GP.

Not thinking outside their speciality

Many doctors don’t like working or even thinking outside their fields. This one is no different.

I’d asked what antibiotics were ok to use with MTX when an actual infection develops (not just inflammation), because many must be avoided. The response was that chronic sinusitis should be referred to an ear-nose-throat specialist.

Been there, done that. ENT doc said nothing can be done - it’s most likely due to an inflammatory disease or a fungal allergy.

Rheumatologist shrugged, but didn’t suggest any antibiotics.

Luckily, I have a good GP. So I let that slide.

Dismissing pain or other symptoms

The most striking experience I’ve had, was when an endometriosis surgeon dismissed adenomyosis pain as imaginary because I was ‘too young to have it’. The next endometriosis surgeon found I actually had an awful amount of diffuse adenomyosis.

My rheumatologist’s next question this week was about pain.

He was surprised that I was averaging a 5-6 pain level every day, and it was slowly increasing.

Solution? Continue for the time being on a stable dose of 5mg prednisolone. I had suspected this would happen.

Unfortunately, he dismissed the headache pattern that appears after every MTX dose as imaginary, until I pointed him to the pain and migraine diary that I have to keep for the pain clinic.

Dismissing other doctors' advice

After asking what I take for the headaches, he disapproved of my use of low-dose codeine/paracetamol, even though I take one tablet, once or twice a week, toughing it out most of the time.I’ve taken this medication since I was 16.

It’s also the medication that the pain clinic said was most appropriate for headaches, considering my kidneys and current medication interactions.

Prescribing inappropriate medication

Instead, he suggested regular, daily ibuprofen plus a proton pump inhibitor (pantoprazole) to protect my stomach, because there is a high risk of developing a stomach ulcer when you are on MTX.

When it was discovered I had dodgy kidneys back in 2000, I saw a very good nephrologist. After monitoring me for several years, he made me promise not to have any strong dose NSAIDs, and avoid even the low dose ones, like ibuprofen or dicofenac, unless absolutely necessary. And then, only take one ibuprofen tablet for a couple of days, then stop.

I reminded the rheumatologist that I had very limited kidney function, that I have no redundancy, and that I was concerned about the strain that daily ibuprofen could put on them.

Rushing an appointment

He smiled as he pushed me out the door with a handshake, saying ‘it will be fine’, that I should ‘stress less’.

No chance to discuss it further, nor to discuss the other side effects of MTX I had wanted to ask about.

The importance of researching new medications yourself

I didn’t feel comfortable with regular ibuprofen, and it was the first I’d heard of the proton pump inhibitor (PPI) class of medications.

Off I went to sift through PubMed, medication info sheets and interaction databases.

From what I read, I’m comfortable with one ibuprofen now and then, to manage extreme flares of the costochondritis or sciatica (part of spondyloarthritis), but away from the MTX dose. My kidneys are being monitored regularly because methotrexate alone can damage them, so any further damage will be quickly caught.

Beware of medication interactions

I was surprised about the research on PPI medications interacting with methotrexate.

In the past, this combination was routine. PPIs were prescribed to prevent and treat the stomach ulcers, nausea and reflux appearing as common side effects of MTX, especially when taken in tablet form.

But studies from 2012 onwards have urged doctors to stop prescribing these medication together.

PPIs stop methotrexate from being eliminated properly through the kidneys. Which means it builds up in your system, and there is a high risk of MTX toxicity and kidney damage, even in people with healthy kidneys.

Admittedly, I’m on a low dose of MTX, and most of these studies were done with high level doses for cancer chemotherapy treatments. But I believe the combination is too much of a risk in someone with already damaged kidneys.

So, for the time being I’ll skip the new medications and see what my (good) GP thinks.

What's the most frustrating appointment you've been to?

This was by far not the worst appointment I’ve had, but it wasn’t a good one. It’s made me consider finding a new, more up-to-date rheumatologist.

Tell me about some of your bad appointments in the comments below - it’s good to vent now and then!