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.

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Making progress

It’s only been three days since starting Sulfasalazine and having a steroid injection. And it feels like it’s starting to make a difference already. Not a dramatic difference, but I have slightly more movement in my left hand and wrist and less overall joint pain. On the flip side, my fingers and ankles are swelling up like the Michelin man (the living tyre)!, but perhaps that’s due to the current heatwave.

Treating my rheumatoid arthritis feels like taking part in an experiment, as even though the drugs have been used on other people successfully for years I’ve had three bad reactions to separate medications since September. From Wednesday I’m doubling the dose of Sulfasalazine so fingers crossed that my health will continue to stabilise. Next up, there’s more hydrotherapy, physiotherapy and a trip to the thoracic (chest) clinic and the neurologist. Plus fortnightly blood monitoring as a result of the Sulfa and I’ll keep going with the gluten-free and dairy-free diet. In the midst of all these medical appointments, thank goodness for my friend’s wedding party and my cousin’s christening – should be fun and a great distraction. As I lift my non-alcoholic cocktail, I’ll be toasting not only their happiness but also celebrating the gradual improvements in my health.

Harsh reality

Until recently, I’d managed to persuade myself that treating rheumatoid arthritis naturally was working for me. It was, but only up to a point (i.e. it lowered the inflammatory makers in my blood). The reality is that I have bone erosion in my joints which is irreversible, along with extreme fatigue and chronic pain in my hands, hips and knees. Diet and an alternative approach aren’t enough to stop this disease in its tracks.

So, a couple of days ago I made a decision. I resolved to speak to my rheumatologist and start a new treatment that we talked about at the ultrasound clinic several weeks ago, Sulfasalazine. Serious stuff as it’s a disease-modifying anti-rheumatic drug (DMARD). I went in yesterday (unannounced) and by chance she had a free slot as someone had cancelled.

Within a few minutes, she was examining me, arranging a steroid injection and giving me a prescription for Sulfasalazine. After a routine blood test, I found myself in the infusion clinic where I took the first pill in front of a senior nurse. (This is because I’ve had three allergic reactions to drugs in the past 10 months). Despite feeling panicky (no doubt anticipating a side effect due to past experience), all my observations were normal (heart rate, blood pressure, lung capacity). Over an hour later I finally left, feeling relieved that I’d managed to start a new treatment. Who knows what lies ahead, but at least I’m taking control of this disease and refusing to let it control me.

Hydrotherapy

Yesterday, when I went for a physiotherapy session, I was offered the chance to try hydrotherapy. As luck would have it, although there is normally at least a 4 week waiting list, amazingly a slot was available the same afternoon. So I turned up a few hours’ later and got into the pool with the physio and one other female (older) patient.

Being immersed in hot water relaxed my joints immediately. The water was warmer than I expected (about 34 degrees celcius). Our physio spent time with each of us in turn to run through exercises, which we practised on the spot. One of these was ‘cycling’ while sitting down on a special underwater seat; another involved walking from left to right while holding the bar. I have a tendency to over-extend my joints (due to hypermobility) so had to work hard to avoid that. By the end of the session, I was exhausted as you don’t realise how much energy you’re using up just doing what initially seem like simple exercises. At the same time, it was fun and we had one or two laughs along the way.

Although it’s too early to say what difference it’s made, my joints did feel less painful while in the pool and I did feel better afterwards. As I’m waiting to go on another drug (Sulfasalazine) which won’t be for another few weeks (I need to have an MRI first), it will be interesting to see what impact this treatment (and other non-drug options) have in the meantime.

Job search

What types of job do people with a chronic illness normally do? Or in fact any kind of condition? I have always worked in offices and have done jobs that involve lots of typing and sitting at desks – not great when you have either rheumatoid arthritis or Ehlers-Danlos syndrome!

The reason I’m considering different jobs is because my last one in environmental policy finished in May (a fixed-term contract). I feel as if I’m at a cross-roads now (partly because I’ll have to go on another Disease-Modifying Anti-Rheumatic Drug (DMARD) – called Sulfasalazine – and I don’t know whether there’ll be side-effects. Not only that, but there’s the tricky question of whether to tick ‘yes’ under the Disability box or to leave it blank. In my experience, the one time I did mention it on my application I didn’t get called to interview. Ever since I haven’t mentioned it until I have a job offer. Then it gets more complicated as I have to explain that I need time to attend medical appointments and ideally work from home one day a week to make it easier to have treatments. How do other people handle this? What kind of job really suits people with RA / EDS / similar conditions?

Searching for a job is tiring enough, but add in the fatigue from arthritis and EDS and it can make it seem overwhelming. A flexible job (ie not a typical 9-5) would be ideal, would allow me to get the arthritis under control and to get a better work-life balance. How to find this dream job though?!

Blood results

Finding out blood test results is always a rollercoaster experience, they are so unpredictable. Last time I had a chance to see my results the ESR (Erythrocyte sedimentation rate) and C-reactive protein (inflammatory markers in the blood) were within normal levels. This time, the ESR was slightly elevated at 8 – (normal range is 1-7) and CRP was ok at 1.0 (normal range is 0-5.0). My Vitamin D is now back to normal levels but I’m continuing to take 1,000 International Units a day. That’s some good news, at least.

Other results that I’m not so happy about:
Lymphocytes – LOW – 1.16 ( normal range: 1.2 and 3.65)
Thyroid stimulating hormone – HIGH – 5.56 rather than 0.27-4.20.

I have no idea what this means so will need to talk to the doctor and rheumatologist about it. Now that I have bone erosions in my hands and wrists, the rheumy wants me to try Sulphasalazine (I’ve already tried Plaquenil and Methotrexate, with terrible side effects). But the next appointment isn’t til September as I’ve got to have an MRI scan for the Neurology team. (They’re still investigating why I’m numb on the right hand side and keep getting migraines).

So, the old-fashioned treatment for rheumatoid arthritis is the next step while waiting to have the MRI test and the result. In other words, hand therapy. Does this mean a splint for my hands, exercises etc? Will be interested to find out. On the other hand, my doctor said that they won’t be able to refer me to the hospital for integrated medicine which is frustrating – and it means going there privately.  Seems unfair that there’s a health lottery in London depending on your postcode. I know that scientifically there isn’t much evidence for homeopathy, acupuncture etc being beneficial for arthritis but I’d love to try them.