Next week I have my first appointment with the Biologics team since the switchback to Humira. Usually a routine six-monthly check up but the significance of this one is that it’s three months since I restarted on Humira – and three months is the period in which you are told to expect to see a benefit if it’s going to work. Newsflash: it isn’t working.

To see the latest update in my series covering the restarting of Humira, visit: Humira update no. 3 – slow progress

Three months of poor health

Despite getting myself back in the gym (of sorts), being more regular with my pain medication and taking longer walks, my pain levels are probably at their highest than at any other point in the last six months – the main problem areas being my right knee, right heel, right thumb and index finger and my neck. My heel and neck pain virtually disappeared a couple of weeks into treatment back in late November but has unfortunately returned in recent weeks.

My sleep has been messed up as well with some nights not being able to switch off until 5am only be be up at 6:30-7am with my son. Two or three nights of that in a row is a killer – it makes you feel ten times worse than the pain keeping you awake does, I can assure you.

The other issue is the infections. I am holding onto a glimmer of hope that the bad run I’ve been on has hindered the progress of Humira but I am also struggling to wrap my head around how my immune system can be knocked down to such an extent that I am picking up everything I come into contact with, yet still be active enough to be causing such a flare. It’s always been one or the other in the management of my condition so it feels especially unfair to be juggling both at the minute.

For an overview/more information on my recent run of infections, see this blog post: Coronavirus – why it’s a disturbing time for biologics users

Perhaps I’m just run down, tired, my body’s on the ropes and until it gets a breather things are not going to change course – but how do you get healthy when you’re in pain, not sleeping, had a bad chest for what feels like weeks, sore throat for even longer and on top of it all are dealing with all the strain on your mental health that comes hand in hand with those discomforts and concerns? It’s not like I can flick a switch and sleep for a week.

How to tackle the appointment?

As for the appointment, how do I approach it? Do I go in hard, demand action, another change? I don’t feel I am in a position to given the noise I had to make to get back on Humira in the first place. Plus I still have faith in it – like a failed relationship, I want it to work as it did so beautifully in the past – but my hope is starting to fade and it’s important that I get the severity of the situation across.

So what else? Double-down the dose on anti-inflammatory drugs? To add to an already growing cocktail of pills, perhaps not. Steroids? Ditto, plus if they were going to break the cycle, the last round of joint injections in the summer would have helped and they didn’t. Physio and Hydrotherapy? I could be doing this myself in my spare time but I need the energy first. Another Biologic? Seems like the most likely option behind stick with Humira but it’s more change to throw into the mix.

Finally, I come to my other fear, the long shot; that something else is going on here that’s been added to the mix. The virtually ever-present infections, crippling fatigue, night sweats, muscle aches and foggy mindedness – yes, it could just be accompanying the infections or an effect of the Humira (the timescales do align) but with so much going on, what if something is being missed or it’s another evolution of my body’s saga of attacking itself? Inflammation away from the joints perhaps? After all, I didn’t get psoriasis until my mid to late 20’s even though I had arthritis 15 years prior to plaques and rashes appearing – and even then, with my medical history, it still took over a year before anyone confirmed it as psoriasis and subsequently psoriatic arthritis.

At what point does the being generally unwell become less about the diagnosed chronic conditions or treatment of said conditions and more about the investigation of the symptoms themselves?

Perhaps I’m paranoid. Perhaps it’s denial and that I don’t want to accept the changes I am going through. That this could just be part of the disease’s progression and every day life now that I need to, in time, accept. I don’t know. All I do know is that from this appointment I need some investigations started. I need some answers; because after three months of infections, new symptoms and the most sick leave I’ve had from work in years, just having a chest x-ray (that came back clear, thankfully), doesn’t really feel like enough.

It feels like a lot riding on this one.

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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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