This post is preceded by: Preparing for the Biologics appointment

Trouble on the horizon

Today was not a good day. As some of you know, I had my biologics review as it has been three months since the recommencement of Humira. You may also know that Humira has not really been working this time around, which made me somewhat apprehensive ahead of this trip.

I was reassured to be greeted by my usual nurse – this woman (who I’ll refer to only as ‘M‘) is an absolute superstar and spent all of 2019 being my champion, voice in behind-closed-doors conversations about my treatment plan and ultimately, my advocate. She goes above and beyond, trusts that I know my conditions better than anybody and was genuinely just as happy as I was when we got my treatment decision reversed in November 2019. I’m sure she’ll never stumble upon any of this but if you do, ‘M‘, I am eternally grateful for your efforts.

To cut what is already likely to be a longread short, I explained everything I had indicated I would in my previous post (available here) – that I was sad to report there had been little progress, that I had a week or two of improvements before the issues returned to their previous levels and went on to be much worse, how I have pain in right heel, knee, hand and fingers and how that the fingers on my right hand had noticeably twisted in the last three months and how I have had infection after infection since the start of November, causing me all sorts of problems at work and at home. Finally, I reported the unexplained fevers, sweats, rashes, asthma attacks, sore throats and productive coughs – the whole time I am reporting this is hurting me as I can see the disappointment in my nurse’s face, she had hoped that this would get me back on the sports field, the bicycle, socialising with my friends again, we all did.

If only I knew there wouldn’t be any relief

The bad news

I was as prepared for the appointment as I thought I could be, however, I was not prepared for what came next: ‘it’s likely that you have developed antibodies, a resistance to biologics treatment’ I felt sick ‘so the treatment that worked so well but I was then forced to come off, gave my body time to adjust, to reorganise defences?’ I nervously asked, but I already knew the answer ‘yes, that’s most likely why it worked so well in the past and not now, we need to do a special blood test to detect the drug’s levels in your system and to look for antibodies that might be acting against this’.

I was told that if the test came back confirming these suspicions then biologics would basically be done for me, no trying a different one, no dosage changes, once your body has learnt to fight one, that’s it.

All I could think about was all the years as a child and teenager that my Doctor told me to keep my chin up as there were these ‘wonder drugs’ being developed that changed everything – and they did change everything for me, for around five years from my late 20’s I was completely symptom free, then I was taken off of them and moved to biosimilars with thousands of others to save the NHS around £5m a year – this was all that was needed to allow my overactive immune system time to recover, but stronger – that one decision may just mean that those ‘wonder drugs’ I waited 15 years for came along, changed my world and died out in just five precious years; that hurts, a lot.

I was then informed that my next option would be JAK Inhibitors, a more advanced but similar treatment that targets the immune cells directly, whereas biologics targets the messages sent to the cells. It’s great that there’s something else to try but the whole time this was being explained to me, all I could think about was how at 35 years old, I was potentially down to one final treatment option. Methotrexate used to work when I was a teenager but eventually gave me ‘the liver of an alcoholic’ in my early 20’s, Sulfasalazine used to work when I was a young adult but that again caused massive spikes in my ALT levels (the test they do as part of blood monitoring to test liver function) so I’ve been on half-dosage in recent years and I’ve virtually tried all other anti inflammatories at some point over the last 25 years with no success. So to be down to just one option at 35, when I already feel like I’ve been through a lot, feels like an awfully long (potential) time to rely on one treatment option.

‘A massive autoimmune response’

The conversation moved on and we talked about the other symptoms since November, the obvious change in appearance to my hands and the redness of the joints in my fingers and essentially my nurse concluded that ‘everything is pointing to a massive autoimmune response’ – I hadn’t fully considered this before but it’s true, my asthma has been controlled since my early 20’s yet I’ve had two courses of steroids for asthma flares in the last three months, I’ve never had chronic fatigue before yet as discussed on this blog, it’s been a real problem for me recently; the night sweats, unexplained fevers – my body is clearly fighting something, the question is what?

There’s three possible explanations here:

  1. It’s a huge flare up of my conditions and the infections have triggered an immune response that set off a domino effect for my asthma etc.
  2. It’s something new/undiagnosed
  3. Or it’s another evolution of my condition – I had AS when I was 14 yet in the last ten years it has been dormant, however in that time psoriasis appeared. I have a medical history of inflammation popping up somewhere for a period, being labelled as something, then dying down to attack somewhere else until a new diagnosis is given – there’s the potential for there to be an umbrella autoimmune condition that covers the AS, the PsA and the fatigue, fevers and sweats. What that condition could be, she didn’t elaborate.
Christmas was when I first really noticed the change in my fingers but the photo doesn’t really do it justice

Losing the battle

Finally, we did the usual checks of the joints, the scoring to track where I am compared to previous visits, which paints a pretty clear picture:

– During the initial treatment of Humira, a row of ‘0’s’ covering multiple years (i.e. no joints with active disease)
– Last year on the biosimilar, 5 in the first half of the year, 6 in the latter
– and today, since the switchback to Humira – 15! 15 joints with active disease – probably the highest it’s been since I was in a wheelchair as a teenager.

There is no doubting that if this current trajectory continues, I will lose my mobility again but with inflammation also being in my hands now, that could mean straight to a wheelchair. As my nurse said to me after the scoring ‘clearly, we have lost control of this situation and we need to stop it‘ – there is no denying that I am in one hell of a fight right now and this may only be the beginning.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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