I recently had a rheumy appointment. This time I saw the biologics nurse rather than my rheumy and I admit I feared being sold short, but turns out I needn’t have worried.
Despite having had PsA quite a while and doing a fair bit of reading about it etc. there are things I struggle to get my head around. This is probably because PsA is not an academic issue to me and so, much as I might struggle to absorb some objective truths, emotions and pain can come between me and the bleeding obvious.
Okay so I am someone who was diagnosed in 2012 after at least a year of flaring and probably many years before that of apparently less troublesome PsA. I improved a bit on Mtx but didn’t escape the flare properly until starting Humira in 2014. I’d felt very ill during that long flare-up and my mobility was severely affected but subsequently I clawed my way back to a really good level of mobility and function and often feel very well.
What this post is about is how I came face to face with what I refer to as ‘the bleeding obvious’ (no blood involved - my granny bequeathed me these ridiculous phrases) and, this time, managed to take it home with me.
As is common in appointments I guess, I was wondering whether disease activity had increased and whether any of my joints were on their way to catastrophic damage. At times I have swelling that doesn’t last, some fatigue though usually not too bad, and also times when I have difficulty walking or indeed doing anything - the severity varies but usually it is just that routine activities are thoroughly miserable as opposed to impossible. There have been more frequent and slightly more severe problems over the last six months.
Somehow, the nurse managed to get through to me. I did my bit by laying everything on the line and she really listened and replied at a level that was slightly above my head at times but mostly pitched just right for me. And I think what she said amounted to this:
- I have PsA
- I have in the past had severe untreated PsA
- No significant erosion of bone has yet been found but that does not mean
that my joints are okay
- PsA does all sorts of nasty things to joints: not only erosions, not only
secondary OA but many types of damage to the soft & hard tissues
- PsA has done a right number on many of my joints
- My joints are likely to kick off and deteriorate in various ways because of
the damage done
- I’m always going to hurt at times and mobility and function will be worse
at some times than at others depending on what I’ve been doing and as I
- I have a very good level of fitness which helps considerably
- There are few if any signs of inflammation so the conclusion is that
Humira plus Mtx are continuing to do a really sterling job
And what I want to say to anyone who has been recently diagnosed is please take on board just how destructive PsA can be and how rapidly it does its fiendish work. Your joints may not be collapsing before your eyes but if the disease is very active the chances are that there will be irreversible changes going on and plenty of them too - there are so many joints in the human body.
I’m more aware than I ever was of the very real need for early, aggressive intervention. Almost all the literature and protocols etc. etc. recommend this these days and there is very good reason for that. I’m doing okay, I’m happy and life is good. But had I had aggressive treatment much earlier things would most likely be even better and, in terms of joints, the future would be brighter too.