I’ve had seronegative arthritis mainly in my knees but occasionally other joints too, for nearly 10 years. I was on methotrexate for almost all of that time and did quite well on it until it flared and wouldn’t settle and I was put on Humira in addition in 2014. I went into a remission I didn’t think was possible - zero discomfort, absolutely no swelling and stiffness or fluid, and almost total movement/ability/stamina. However... I’ve recently stopped taking both these meds as I was getting increasingly ill since I started the Humira - about four or five times a year a viral infection with real bad post-viral fatigue that would knock me out totally for about 2 weeks. Then this year I had a bout of toxoplasmosis that had me off work and bed-bound for 10 weeks and which has left me with an energy deficit I don’t think I’ll ever recover from. So I’ve been off the metho & Humira now for nearly 8 months, in the hope that my immune system will recover, and in the last month have started to flare again (big surprise). Loads of fluid and swelling in my right knee, pain in both knees, unable to bed right knee, difficulty walking, etc etc. Just like old times!
To make matters more complicated... I’ve recently relocated to my native Scotland from London, moved into a new flat AND started a new job! I am a glutton for punishment. It’s all for the right reasons - better quality of life etc (and I also work in an industry where jobs north of the border are incredibly rare so when they come up you just have to grab them, arthritis or no) - but at the moment everything just feels really hard. Trying to get used to a new environment and learn the ropes in a new team with more responsibility than my last role, all while in pain pretty much all the time and limited mobility. I’ve been *so* unbelievably lucky with my long bouts of remission, that I’m quite bad at dealing with the pain every day (it’s a nice problem to have, I know). I’m trying to keep positive about it though, because it’s my choice to stay off the metho and Humira for the moment. Added to all this is the complication that because I’ve moved, I need to wait to be referred to a new rheumatology team which is going to take the usual 12-18 weeks. So I’m kind of out on a limb with no treatment expect what the GP can offer. They’ve offered me a systemic steroid injection which I’m not sure I want to go for yet, as I’ve heard mixed things and at the moment I’m just about coping. I’m taking naproxen and paracetamol to try and manage it, which it sometimes does and sometimes doesn’t, and I’m also having acupuncture... nothing to report on that score yet.
Anyway, I am such a rambler so I’ll stop now, I also just wanted to ask what people think about how much of a bad idea it is to stay off the really strong drugs - DMARDs and biologics - for longer periods? I really wanted to be off them for a year to give my battered immune system a bit of respite, but at the same time I don’t want to run the risk of doing permanent damage to the old knees. In the end I suspect it may be a moot point as I might not get an appointment for another 3 months in which case my self-prescribed year will be just about done! I wonder if I’m being too cavalier about my joints... but I think before I was being too cavalier about the drugs. Boy did they sort my arthritis out... but it’s potent stuff.
Thanks, guys, for reading my novel if you made it this far. Hope you’re all keeping relatively well.
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