Rheumatoid disease or rheumatoid arthritis?

Rheumatoid disease is more descriptive than rheumatoid arthritis. These words capture its systemic nature and that it can affect organs such the heart, lungs and eyes. RA, by contrast, is too easily confused with osteo arthritis. Lots of people, upon hearing I have arthritis, say, ‘Oh, I have a bit of that in my knees’, or ‘My mum has that’. Questioning them further, it turns out that they have osteo arthritis. When they find out what RA/RD really involves, people often look surprised. Many people don’t know the symptoms and the reality of what it’s like living with RA/RD. I’m pleased that the National Rheumatoid Arthritis Society’s RA Awareness Week 2014 (16th-22nd June) has ‘invisible disease’ as the focus, as its hidden nature is a huge part of the problem when it comes to public perception.

Until recognition improves, I’m going to continue using both rheumatoid arthritis and rheumatoid disease in conversation. Media coverage of RA/RD should focus on the fact that drug remission is possible, although it may take years, and that lots of people can successfully manage their condition with the right treatment and support network (from friends, families and health professionals). Having said that, it’s also important that health professionals tell RA/RD patients about potential side effects from medication but this shouldn’t be done in a ‘doom and gloom’ way which makes people too scared to take the drugs. The key message is that the benefits of taking the medication outweigh the risks. I had no idea what would happen to my joints if I continued without drugs (I had a 7 month hiatus from them), because no one had ever properly explained what could happen and I didn’t know I had erosive RA. That all changed when my GP said ‘Your joints will crumble if you continue this diet-only approach’. I also think that talking to others going through it is invaluable, whether in person or online. Sharing stories and encouragement has really helped me and I’m sure it’s helped others too. In an ideal world, there would be no need for an RA/RD Awareness Week, as everyone would know what it is, how its treated, and that remission is a distinct possibility.

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Preparing for anti-TNF treatment

It’s been a whirlwind month. Not in a ‘how exciting!’ way, but in a ‘rollercoaster that you’re not particularly enjoying and want to get off now’ way. Several attempts at taking Sulfasalazine / Sulphasalazine led to:

1) Rash on my chest & tightening in throat, ending up in A & E with intravenous anti-histamine via a drip and an adrenaline injection, plus an overnight stay;

2) Second attempt: white blood cell count was too low so stopped & restarted once bloods were back to normal;

3) Third attempt: developed a mouth ulcer, it affected my liver & the white blood cell count dropped again.

I’ve been told to stop taking it and had a chat with the specialist rheumatology nurse today about alternative treatments. Having ‘failed’ (i.e. didn’t tolerate or respond well to) three DMARDs (Disease Modifying Anti-Rheumatic Drugs), the next step is either one final DMARD, specifically Leflunomide, or an anti-TNF (anti-Tumour Necrosis Factor) drug – probably Humira or Enbrel.

The nurse ran through what taking the different treatments would involve and the potential side-effects, as well as handing me lots of print-outs about the drugs. I’m reluctant to try Leflunomide as if I want to have a baby I would have to wait 2 years between stopping it and becoming pregnant.

Humira and Enbrel are both anti-TNF drugs, a totally different type of drug to the DMARDs I’ve already tried. According to Arthritis Research UK: ‘In people with rheumatoid arthritis and some other inflammatory diseases a protein called TNF is overproduced in the body, causing inflammation and damage to bones, cartilage and tissue. Anti-TNF drugs block the action of TNF and so reduce the inflammation.’

I felt quite depressed today realising that I have no option but to try yet more new drugs. Yet the alternative would be worse: given that I have bone erosions, without treatment my bones would be destroyed and I’d need joint replacements. New treatment is infinitely preferable to joint replacement but the potential side-effects do make it scary.

I have a week to think about treatment options and will see my consultant next Friday. It’s not a decision to take lightly and I need to be well-informed first. Hearing from my specialist nurse about people who have achieved drug-induced remission spurs me on to try another new treatment. The uncertainty about getting better is hard (so many ‘What ifs’ spring to mind) but with the support of the rheumatology team, my family and friends, I’m determined to reach drug-induced remission and to stay there.

Knowledge: power

For a long time I didn’t even know about the Disease Activity Score, ‘a measurement of rheumatoid arthritis disease activity’. It turns out that mine is currently 6.1. Apparently that means it fits into the ‘severe disease activity’ bracket:

•    Less than 2.6: Disease remission
•    2.6 – 3.2: Low disease activity
•    >3.2 – 5.1: Moderate disease activity, may merit a change in treatment for some people
•    More than 5.1: Severe disease activity, will merit a change in treatment for most people

Rather than freaking out about this newly acquired knowledge, it’s actually strengthened my resolve to do everything I can to get better and to lower my DAS. That means a combination of drug treatment, regular blood monitoring, physiotherapy, hydrotherapy, hand therapy, wearing splints on my hands, a healthy diet, relaxation and gentle walking.

What I’ve learnt is to ask lots of questions to get informed about treatment plans; to trust health professionals to carry out all the relevant health checks rather than worrying about it; and to keep making time to enjoy non-health-related interests. The more I know about this disease (I used to say condition but that made it sound more harmless and non-aggressive than it is), the better equipped I am to deal with it mentally and physically.

Future remission

Today in the rheumatology clinic I met someone who’s had rheumatoid arthritis for 27 years and has been on anti-TNF therapy for the last 11 years. In fact, he might have been one of the very first people in the UK to go on this treatment. He said the drug has transformed his life. On the one hand, it was reassuring to hear this as I’ve been told that I may have to go on anti-TNF therapy after Sulphasalazine. But on the other hand, it got me thinking. Where do I want to be in 27 years’ time? I really don’t want to still be dealing with this disease. My goal is (drug-induced) remission, and I’ve no idea how long it’s going to take but I’m impatient for it to hurry up. In the meantime, there’s no point putting my life on hold, as realistically remission might take a while.  (I’m determined not to think about it in months or even years, but just focus on one day at a time). If only I had a crystal ball to see when (I refuse to say if) I will kick this disease into permanent remission.