I started this blog 344 days ago as I was about to embark on my third biological treatment. And you know how the saying goes, third time lucky and all that. Well, not for me it seems. That treatment, if I was one of the lucky ones, could keep me symptom free for up to a year - a dream come true for someone who has been in pain every day for over nine years. But anyone who has done primary school maths will realise that 344 days is not a year. Not only has it not kept me symptom free for a year, but already my rheumatologist has decided that it's failing altogether.
For the last few months I have been struggling with what I can only describe as extreme fatigue... not that I've mentioned it much or anything. According to my rheumatologist, this means that the disease is still very much active. Well that, plus the multiple swollen joints are probably a bit of a clue.
So it's onto biological treatment number four: Tocilizumab. On the one hand I'm incredibly grateful that there is a 4th treatment available (and a 5th, and a 6th, and a 12th for that matter). But on the other hand I can't help but be losing hope a bit. How many treatments am I going to have to put my ever-crippling body through before I stumble (literally) across one that actually works? And what if none of them work? The longer it takes to find a successful treatment the more damage is being done to my joints, and potentially my heart and lungs too. Plus there's a big downside to this new joint juice... I have to go into hospital once a month for it. I'll be honest, being told I have to give up half a day of my life every single month, potentially for the rest of my life, to spend in arguably the most depressing place in the world for an RA sufferer, is not the best news I've ever received. But I've had 10 days to process it all. I've got my tears out the way. And now I'm ready to fight this thing harder than ever.
My journey with Rituximab may have come to an end, but I'm going to continue sharing my journey as I fight this disease and find out whether this new drug will be the one to transform my life.
2 comments:
Sincerely wishing you the greatest of luck :)
As a fellow RA sufferer (however only for 2 years) I am crossing all my fingers and toes for you. My first biological was Golimumab which didn't work and I started Rituximab a couple of months ago. Whilst is so far hasn't made me fell like I used to it does at least help, and I keep hoping it will go that extra mile for me as I ma tried of trying out new drugs that don't work. So for you who has tried way more I really do feel for you.
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