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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3 thoughts on “Preparing for anti-TNF treatment

  1. Found your blog just now by searching for “RA”. I also got RA (since 2009). I’m turning 38 this Fall. I’ve been taking anti-TNF for over two years now and it has really made a huge (positive) change in my life. I’ve never heard of the Leflunomide medication but having to wait 2 years before even trying to become pregnant sounds “wow”. =) I hope you will feel better with whatever meds you decide to take.

  2. Hi Cecilia, Thanks for commenting – it’s reassuring to hear that anti-TNF has made a real difference for you. I’m going to start Humira soon so fingers crossed. It would be amazing to feel in control of this disease, rather than it controlling me (which is how it feels at the moment)!. Thanks again, it’s also helpful to hear from someone else who’s a similar age.

    • Sorry, didn’t notice your reply until right now. I have several friends (through a Facebook group for people with rheumatism) that use Humira and are happy with it so I’m keeping my fingers crossed for you. I do know what you mean with wanting to be in control of the disease. I think with the right meds it is possible. I’m taking Simponi once a month and I still remember the first time I took it. After a few days I suddenly had so much energy that I didn’t recognize myself. πŸ™‚ Luckily it has continued that way ever since even though I still get minor issues every now and then very much depending on the weather. I’m still in the “hell” of cortisone pills though which is impossible to get rid of. 😦

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