Humira update no.2 – mixed emotions

Note that this blog carries on from a previous post, which can be found here: http://joelvsarthritis.co.uk/2019/11/25/humira-treatment-update-1-week-in-signs-of-life/

At the time of writing this, I am taking my third Humira injection, so six weeks into the treatment and I very much have mixed emotions at this time. Writing that in itself is depressing for me given how hard I fought to get put back onto this particular biologic and how effective it was in the past. It certainly hasn’t been the life-changing, mind blowing experience it was first time around – but that might not be the fault of the drug, as I’ll go on to explain.

As reminder or for those that haven’t followed my story previously or are new visitors (welcome!), when I was first placed on biologic treatment around 3-5 years ago after being diagnosed with Psoriatic Arthritis on top of pre-existing autoimmune diseases, it was a complete game changer. Within days my pain had faded, within a week or two my rashes had all but disappeared and by the end of the first month, I was virtually pain free. It was the stuff of miracles and I couldn’t believe that this type of drug they told me was in development when I was just 14 years old and pinned so much hope on over the 15-20 years actually worked, first time, the first one we tried and at unbelievable speeds.

For reasons that I don’t want to anger or bore myself talking about it again, I won’t go over old ground regarding why this treatment was changed but you can find a quick overview here: https://joelvsarthritis.co.uk/2019/11/07/example-post/

So I was absolutely buzzing to get back on Humira, I had an awful 2019 healthwise and needed a break, as well as relief from the pain.

Six weeks in and I can feel the Humira working; rashes have faded although not gone completely and some areas that caused me real problems over the year, such as my heels, toes and fingers are certainly nowhere near as painful, to which I am very grateful for. However, as regular followers will know from previous blog posts, I’ve been on a shocking run of luck lately in terms of my general health so it’s difficult to gauge the effectiveness fully and it is certainly affecting my body’s recovery and immune response.

As with all biologics users, my immune system is compromised and we all expect several infections a year. These are normally in the ear, nose, throat and chest regions and normally quite low-level, often not requiring antibiotics. However, since the end of October, I have had a 6 week long chest infection followed by a 2 week long bout of tonsillitis and a 2 week sinus infection; running fevers most weeks, causing my asthma to flare up (which is normally very well controlled), night sweats, breathlessness, all over joint pain and most crippling of all chronic fatigue to which the like I have never experienced – I could literally sleep all day and night and still wake up exhausted and ‘heavy’ is the best word I can use to describe it. I’ve had 3 courses of antibiotics and a course of steroids and still I am getting ill.

With all of this in mind, I am cutting Humira some slack because until my Drs can work out what’s causing me to get ill all the time whilst my bloodwork remains normal for me (ruling out any further infection, anaemia, bad arthritis flare etc), who knows what the treatment is trying to contend with. All I know is that I am fighting something – it’s why I’m so tired, get sweats and had random temperatures for the best part of two months now but the tricky bit is working out whereabouts in my body that fight is taking place. I just hope it’s not yet another autoimmune disease as I must admit the fatigue, sweats and all over joint and muscle ache feels very similar to when I was under the weather right before I developed psoriasis rashes for the first time that ultimately lead to me getting Psoriatic arthritis added to the growing list of examples of my body’s defences picking a fight with itself some few years later.

We are starting with chest xray’s next week and going from there but after what this year has thrown at me though, I could really do without another drawn out multiple-month long diagnosis process – watch this space.

8 Comments

  1. Hope you feel better soon.

  2. So sorry things aren’t going as well as you’d hoped, but here’s hoping they can find a way to control the infections and the Humira keeps doing what it’s supposed to! Very best of luck!

  3. Sorry to hear this Joel, I hope you get some answers from the chest xray.

    • Thanks Ami. It seemed like a random first step but you have to have regular chest xray’s on biologics so assuming they are ruling out infection and lung issues before we dig deeper.

  4. Sorry for the re-post if anyone got a notification. This post somehow got moved back into drafts during the website refresh/redesign and given it proved quite popular with a lot of messages received from it, it seemed a shame for it to sit in drafts 🙂

  5. Pingback: 5 things in 2019 that I am thankful for – Joel vs Arthritis

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