It all started with a few swollen joints in the months before summer 2006, these gradually got worse. The peak was my a-levels, which didn’t go well at all. I just thought I was run down and tired because I was stressed out. This was in fact far from the truth. We went on a family holiday the day of my exam results (which turned out I’d done unsurprisingly shit in) and I spent 2 weeks in Turkey unable to move any further than to the pool outside our hotel. This was torture… Although I did manage to paraglide off a cliff (with an instructor) meaning that for the last 3 days of my holiday my knees were the size of coconuts. Shortly after this I was diagnosed with Rheumatoid Arthritis, at the fab age of 18.
On my 8th year with RA things are definitely better than they were at the start- I can walk properly, tie my shoelaces and make my own food- all things I thought I never would do for myself again. Last year I qualified for a fancy treatment to top up on my normal meds. I routinely take methotrexate, this is known as a DMARD (disease modifying anti-rheumatic drug), this targets the cause of the arthritis- my immune system. It has lots of lovely draw backs including me feeling very under the weather for half of every week (you take it once a week) and you can’t go on fancy holidays to south east Asia, Africa or anywhere that requires interesting vaccinations, as the methotrexate stops your immune system from coping with these in the right way.
Anyway, my new fancy drug is called Rituximab. This targets a more specific immune system cell than the methotrexate. It kills B cells, which are supposed to ‘remember’ bacteria/bugs that normally invade the body, but in RA these cells react to your own body because it believes this isn’t part of you. Therefore causing the inflammation associated with RA. It turns out that this medication works really well for me, but annoyingly not forever and I found out yesterday I have to have another 2 rounds of treatment. This is good, but also bad for the stressed out final year PhD student I am as it involves time consuming hospital visits.
As things look up I have discovered something new and very good to the world of those under 30 with RA. Usually void of leaflets our consultants can offer us nothing but the advice they give to the over 70s… Useful when you want a “normal” teenage life (sorry Arthritis Research UK, you just weren’t that helpful when I was younger- although your services are better now!)
Arthur’s Place is a social networking website designed especially for young people with arthritis. It offers advice, articles on the drugs we have to take and forums for discussions on everything from tips on how to deal with doing your make up on a bad day, to being able to bitch about how annoying it can be sometimes. I was one of the lucky few to get to road test Arthur’s Place before it went live, with some fellow patients and I think it really will be a big thing for the arthritis world. Whilst it may not be all useful to me now (I’m old now!) the site has fab tips I wish I’d have been given when I was 18 and had no idea what was going on! It’s also good for old timers like me to pass on my experiences as an RA patient.
I will leave you now with the thought that it isn’t just OAPs that get RA…!