Living with AxSpA in the UK

My symptoms first started years ago, but I thought it was just back or disc problems. Then about 5 or 6 years ago, I noticed pains in my knees that got worse. Next, it was hips, lower back, and feet — what I realised was enthesitis.

I also have asthma, requiring occasional oral steroid use. When I took prednisolone (low dose, 20 to 30 mg per day for 5 days), all my other symptoms disappeared — sometimes for a month. I tackled my GP, who wasn’t really interested in pursuing a diagnosis. No surprise there for anyone used to dealing with the NHS.

My diagnosis in early 2023

I clearly had an inflammatory condition, so I looked for answers and a diagnosis. A chest physician I’d seen for my asthma recommended a rheumatologist. I did this privately through my work insurance (BUPA), so I was seen relatively quickly — about a month. I had an MRI and blood tests and was diagnosed with AxSpA.

Here's the real kicker — BUPA sees this as a chronic condition and won't treat it. So it’s back to the NHS to the back of the line. I had to wait for months untreated. I finally got to see an NHS rheumatologist who wouldn't use the diagnosis already made and repeated all the tests. AxSpA was confirmed again.

Finally getting treatment

Finally, in October 2023, my adalimumab arrived. It was a 14 day dosing schedule. But by early 2024, it was clear it wasn’t working. In my day job, I work in anti-ifective research. We’re hot on pharmacodynamics (the interrelationship between drug, host, and effect on target) so I looked up adalimumab.

It has a very long half-life and takes 100 days to reach steady state in the body (i.e., slow action) and, critically, is cleared more rapidly the heavier you are. I weigh 135 kg, so I was clearing the drug out of my system before it could reach steady state.

I alerted the rheumatology team, and after much badgering, they reduced the schedule to 10 day dosing, which still was not short enough. It still didn't work. It was clear why, but the NHS wouldn’t act further.

Switching medications

By early 2025, I was crawling up the walls with the pain, and the fatigue levels were making life a misery. Finally, in May, I saw a new consultant who ordered the necessary blood tests. Guess what? My adalimumab levels were virtually zero, and I’d also developed antibodies.

They’ve now moved me to secukinumab on a 300 mg schedule, but I’m still waiting for the drug to start. In the meantime, I'm living on naproxen and paracetamol. I had so hoped I’d be mobile again by the summer so I could get out walking, photographing wildlife, and fishing again, which I really cannot do any longer. I’ve had to abandon all of that. I’ve been prescribed gabapentin for pain, but that hasn’t started yet, either. I have no idea if it will help.

Another fight for pain management

Here’s kicker number 2: secukinumab clearance is also related to bodyweight, so the dosage schedule I’ll be on will be insufficient to reach the serum levels required for efficacy. Reading the literature, you need to have a trough level of 39 mg/L for efficacy, which can be achieved if under 90 kg in weight, but not over, on the standard dosing regimen. The time between maintenance will have to be reduced from 4 weeks to 2 weeks to achieve that. So there will be another fight with the NHS coming up.

The NHS ignores outcomes in AxSpA and, despite the rhetoric coming from government, is not patient-focused. It is cost-focused and box-ticking focused. Bizarrely, instead of making sure treatment is clinically effective (and therefore cost-effective long-term) the NHS will happily waste money on an ineffective treatment.

By spending a bit more on the drug, they’ll make me productive again. Oh, and the adalimumab blood test they were so reluctant to perform costs all of £30. They wasted at least a year of adalimumab at high cost for the want of proper monitoring. Dealing with the NHS is a continual round of delay, obfuscation and frustration.

I have some basic questions for the NHS. Why do you not routinely monitor serum levels of biologics (or markers for them) to ensure the best chance of efficacy? Why do you not investigate the potential use of very low dose prednisolone in pulsed therapy (cheap and effective) in AxSpA?