This was supposed to be a happy time!

Note that this post follows on from the a previous blog post which can be found here.

So to give a little update since my last post regarding this. Regular followers of the blog will know that in the last two weeks I’ve recieved my delivery of Humira and I was super excited about seeing the benfits it would bring me. I’d be lying if I said I wasn’t slightly apprehensive as well that for some reason it may not work as wonderous as is it did back in 2018 prior to the forced switch to Biosimilars.

You also might know that I had been ill for over a month with a chest infection, asthma and generally feeling unwell as can be the case with biologics so timing the injection was challenging. I delayed by a week but by this point I starting to get a lot of pain. My sleep was being disrupted again and I lost my appetite. Therefore, I decided that the greater good was to take the injection as it would be really awkward to try and explain to my employers how I’d been off for infections due to my compromised immune system and then just as I got back to work, off for the condition itself as I’d stopped my treatment. By this point I was coming to the end of my antibiotics and steroids and I had stopped coughing etc. so although not 100%, it seemed like a calculated risk that was worth taking.

Fast forward a week and I am really disappointed to report that as yet, I am not noticing any real benefits to the Humira. I know it can take up to 12 weeks but last time when I initially started it, I was genuinely having game-changing benefits within a week. As my wife keeps reminding me, I have had a rough couple of weeks, I am run down and fighting on multiple fronts so it may take a while for Humira to do it’s thing.

So this week I return to work, I am not 100% and appreciate that last time I returned way too early and probably made things worse but I work in the NHS as a manager and am one of those types that probably set the bar higher for myself than I can actually accomplish. I feel like I have to lead by example and that things will slip if I am taking weeks off work but as people keep trying to remind me, with everything that I’ve had going on in 2019, work should be a little way down that list of priorities – unfortunately, I’m just not that type to switch off or not constantly stress about the work and the pressure on others I am leaving back at the office.

Day 1 went ok, I was shattered afterwards but I got through it, however, the next day I awoke to horrendous pain in my joints, in multiple locations. At this point I was freaking out a little as I was on Humira now, what was going on? The next day I decided to work from home for the day as I have a good chair, adjustable desk and other aids at home that make things a bit more comfortable, plus it means if I need a moment when the pain gets too much, I can do so in privacy. However as the day went on I progressively felt more unwell: awful fatigue, throbbing headache at the back of my skull, bloodshot eyes and by the afternoon a temperature. Embarrassingly at 3pm I had to tell my boss I was stopping the clock for a 30min power nap; I simply couldn’t go on any more at that point. I dragged myself through the rest of the shift but with a 39.5C temperature and by this point shaking all over, it was clear that this wasn’t the flare I suspected first thing but yet another infection.

I went to the Drs today assuming it was a return of the chest infection as my cough had returned by the morning (although it was more dry and not productive like before). Upon examination, it turns out that the raised glands in my neck, temperature, sore throat and swollen tonsils had all the hallmarks of early Tonsillitis. Which you may recall my son had twice in the last month or two, followed by my wife – I am literally a walking magnet to infections on biologics.

The GP suspects that it will be acute by the weekend with the telltale white spots on the tonsils (although I’ve never had it before personally, I know from my family getting it) and has given me a prescription for some stronger antibiotics but I have to reserve taking them until it’s full-blown tonsillitis due to the small chance it may be viral and concerns over antibiotics resistance during this whole episode – I really would be screwed if that happened. So cue an uncomfortable email to work trying to explain how it’s yet another infection and that I have to wait to get really sick before I can get better, keeping in mind I was only back in for two poxy days after two weeks off previously.

I hope that my next post will have some more positive news to report, either on this issue or the Humira front.

Keep fighting – Joel.

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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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