Good news

My rheumatologist did an ultrasound scan on my hands and wrists today. I was really worried about this procedure, as it’s been a whole year since the last scan and it feels (physically, at least) as if my body has gone downhill because of rheumatoid disease. Unexpectedly, inflammation levels have decreased markedly and the bone erosions seem to have stabilised. She’s going to prepare a detailed report but objectively, from what flashed up on the monitor, there has been an improvement in my joints.

So why did I get teary when I saw this? Because the results on the screen don’t match how I feel. Don’t get me wrong, I’m over the moon that Enbrel seems to have slowed down the disease. It’s just that it doesn’t make sense that the results show an improvement on last year, and yet I feel worse. My shoulders, elbows, knees and hips all ache continuously whereas last year it was confined to my knees and hips. Energy levels are still zero and my limbs feel heavy, almost as if they’re being held down by weights when I try to get up or move around. An added complication is that I already had Ehlers-Danlos Syndrome (Hypermobility) when I was diagnosed with RD/RA four years ago. My rheumatologist said that it looked like EDS could be affecting me more than RD/RA at the moment. I’m not totally convinced but nowadays it is virtually impossible for me to separate EDS symptoms from those of RD/RA.

The next step is an MRI on my hips which will give a fuller picture. I’m going to continue with the Enbrel (twice weekly injections), Vitamin D (1,000 International Units daily) and Risedronate Sodium/Actonel for osteoporosis (once weekly) for now, and will have another ultrasound scan in 6 months’ time. I’m feeling cautiously optimistic about the future. I recognise that I’m impatient to reach drug-induced remission. I need to be realistic and acknowledge that managing my RD/RA effectively may be the best I’ll get, but that won’t stop me being optimistic about getting to remission. I’m happy that I seem to be getting better and would like the chronic pain, fatigue and brain fog to lift magically. That’s what I thought would happen with the Enbrel, as I know it has with other people. Having said that, comparing myself to myself (rather than others) is essential, because RD/RA affects individuals so differently. Enbrel is making a difference slowly, so it’s time to celebrate this good news and keep moving forward.

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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.

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.

Changing diet

A few months ago, I decided to radically change my diet. Why? Because I had a bad reaction to more than one arthritis medication (including one severe allergic reaction to Plaquenil /  Hydroxychloroquine Sulphate in September 2012). My mother had one friend, E, who had tried a special diet for over a year and had been told by her rheumatologist that she’d had a ‘spontaneous remission’. That was enough of an incentive for me to do something.I’d already cut out alcohol in summer 2012. Then in early December, I developed continuous migraines and permanent numbness down the right hand side of my body after being on injectable Methotrexate for just a month. A private migraine specialist suggested I drop chocolate, coffee, tea (all caffeinated drinks) and cheese from my diet. All things I love! Other food I stopped eating last December: dairy, anything with gluten, potatoes.

It sounds like a lot, but there are actually loads of things I can still eat, including: gluten-free porridge for breakfast with a banana, rice, lots of fish, particularly salmon and mackerel, tofu, loads of vegetables such as avocado, sweet potato, cucumber, beetroot etc, soya yoghurts, seeds such as flax and pumpkin, nuts, fruit (everything apart from citrus). I occasionally eat organic chicken but no red meat. I also drink one tablespoon of organic cider vinegar mixed with one teaspoon of honey in a small amount of hot water.

After just a few months on this restricted diet, I had blood tests done and two of the inflammatory markers (ESR and CRP – erythrocyte sedimentation rate and C-reactive protein) were back to within normal levels. This astonished my rheumatologist when I saw her on 1st March. I insisted I was feeling better (which I was, although my hands still looked inflammed). Despite this great news, I still had, and continue to have, active inflammation. This is clearly visible in my hands and wrists, and one wrist has a swollen bump between the wrist and hand, called an effusion.

Against medical advice (as the rheumatologist wanted me to try out another drug), I asked to put the treatment on hold til I’d seen the neurologist about the migraines and numbness. She reluctantly agreed, but said she’d scan my hands again with the ultrasound in June to assess the level of inflammation.

Although I realise that diet alone is probably not enough to have a remission, I keep E’s story in my mind as inspiration because I really want this to work. I know everyone responds to medication differently, but in my case the side effects / adverse reaction always seems worse than the benefits. So, for the time being I’m sticking with it.