Immuno Kryptonite

There are lots of treatments that can help treat the symptoms of AS. I’m going to try to cover as many of them as possible eventually, but one of the things that I see the most questions about online are Anti-TNF treatments.

Superman and KryptoniteThey’re also the drugs that have had the greatest effect on my life, so today I’m going to talk about them. Don’t forget, I’m not a doctor, rheumatologist or medical professional. I have a grand total of 9 GCSEs, an NVQ in customer service and a MUG award that I was given when I worked at Starbucks for being friendly :).

So please feel free to listen to my experiences, but never change your treatment without first speaking to your Rheumatology team. AS affects everyone differently, and you may (OK – probably) have have other underlying conditions. Our bodies are definitely different and so will be affected differently.

Right, remember back in my first post I said that my immune system is too good? Well, think of it as a superhero. Imagine Superman got bored because he beat all the bad guys so he started using his heat vision on people who chewed with their mouth open, or freeze breath on people who truly felt that Mandonna was better than Kylie. (I mean really!? Seriously!?)

Sounds pretty good yes? Terrifying that it’s an arbitrary measure, but he’s trying to help right? Now imagine that he’s been exposed to red kryptonite (Smallville style) and is an angry petulant teenager. That’s the AS immune system. Lashing out at all and sundry because of some imagined slight. So scientists developed a medicine that would work like kryptonite, weakening the immune system so that it wouldn’t be strong enough to attack the spine. Since being diagnosed I’ve been trying to find out more about how this whole thing works and this is what I understand.

The immune system works in two main phases. Most people are aware of the second (creating immune cells that fight specific foreign bodies) as that’s why we get vaccinated. (Well, most of us do, and I’m not going to get into the anti-vax rant!)  But that takes time. Your body needs to analyse the threat and build an effective defense. So there’s a first stage before this kicks in which is called innate . Part of this first stage is inflammation. There are a group of drugs out there (both manufactured and natural) called Non-Steroidal Anti-Inflammatory Drugs (usually shortened to NSAIDs). These NSAIDs help to reduce the amount of inflammation that your body is creating.

Ever wondered why Ibuprofen and Aspirin work better on throbbing headaches but Paracetamol works better on stabbing pain? That’s why. But in people with immunity-related conditions like AS this inflammation goes too far and, although NSAIDs can reduce the discomfort, there’s too much for it to be beaten.

Humira injection
Humira injection

That’s where my Kryptonite comes in. Once every two weeks I get to stab myself with this lovely little epi-pen style injection that fights to reduce my immune response. It’s called an Anti-TNF (Tumor Necrosis Factor) treatment. I’m afraid that I haven’t a clue exactly what the TNF thingie does, I think it’s like a cheerleader for the immune system, egging it on to chew with its mouth open and listen to Mandonna’s Music album on loop.

But when I inject myself with Adalimumab (that’s the proper name for Humira, a bit like vacuum cleaner and hoover), it kind of shuts up. I don’t know if I can tell you how good that feels. It’s not a cure, but it’s better than NSAIDs by themselves. Some days I can even do without my painkillers and NSAIDs completely!

Like any drug though, it has its downsides.  Firstly – I’m consciously suppressing my immune system every two weeks. I’m an adult though so my body’s learned how to produce lots of different resistances to lots of different infections. But it takes longer to actually produce them in enough numbers for them to work. I’m also consciously trying to keep my inflammation levels down so that I don’t end up flaring again.

So if I try to keep out of your way when you’re ill – it’s not that I don’t love you any more (I promise I love ANYONE who can be bothered to read through my drivel!), it’s that I don’t want to end up laid out because of a simple infection. I’d rather keep my sick days from work to a minimum – and for the really important stuff (like days down the pub! – Only kidding, I’m teetotal.)

But the other thing that I need to be aware of is foods. This is the killer. When my nurse came out to show me how to inject myself she gave me a huge list of things that I can’t eat (steak, blue cheese, shellfish, smoked meats, sushi, unpasteurised dairy, fresh unprepared produce etc…) as these foods have a higher risk of carrying infection. Basically I have the diet of a pregnant woman for the rest of my life. So if I’m groaking at you as you sit there with your cheese board and smoked salmon, you know why!

Yes, I’m more prone to infections, in the last year and a half I’ve had 4 bouts of tonsilitis, 4 generic throat infections, 3 colds and a few scares. Before Humira I’d never even experienced a cold – as I said – super-immune system. (And yes, I have more sympathy for my partner now that I have!) But before it getting out of bed hurt, it hurt for 6, 7, 8 hours with NSAIDs and painkillers. Now I’m fully functional in about 2-3 hours and my drug intake has dropped dramatically. Unfortunately it doesn’t work for everyone, but I’ll tell you something; it’s a miracle drug for me.

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