Had a rheumy assessment yesterday and sadly after nearly a year on this (for those than don’t know, it’s a biosimilar to Enbrel) and it’s astonishing clear this biologic is no longer doing anything for me.
Out of the 68 joint count, 48 are very unhappy, excessively so and another 5 are grossly swollen. So there’s only 15 of those 68 joints that aren’t giving me hell, I think. As I’m not totally sure till I get I get the letter that it’s ‘plus 5 swollen ones’, or whether of the 48, 5 are swollen. Being a lawyer such preciseness is important to me sadly:rofl: Not that it actually matters at all really. The main thing is that I feel just bloody awful and thankfully there’s evidence as to why I feel I so bloody awful.
One of the most challenging progressions is that this hell of a disease has settled somewhat too long in my sacroilliac joints now, which I find overly challenging on all counts and more than a pain in the behind. It hates me sitting, it’s not great with me lying down either. It likes me to walk, but the other ‘affected’ joints aren’t too happy with too much walking though. I want to go and find a zero gravity flotation chamber and just bob about in that for a while. Gosh that would be bliss wouldn’t it? That or a big swimming pool all to myself.
And I had forgotten what the fatigue issues were really like when this disease is so uncontrolled. That’s been challenging too along with the brain that’s turns into treacle. And along with the incessant need for tears. Being of the Celtic persuasion, and female, tears and the ability to cry them is fairly standard for all sorts of reasons, joy and anger too, but I’ve reached ridicuous proportions these last few weeks. And rheumy yesterday, got cried all over too. So did the lovely woman on the Tube who gave up her seat for me on my way home.
We worked out yesterday that I initially was a good responder to Benepali. then wasn’t and then finally got a really good 3 months out of it, January to March and then it just gave up, packed it bags and took a hike. Or rather packed it bags and just sulked.
So next up is Imradi (the biosimilar to Humira). In the UK it takes a little time to get the ducks in a row NHS funding wise, so earliest I’ll start this is probably July. Meanwhile I go back to residing in ‘prednisolone land’. Thankfully I do quite well on pred, certainly emotionally. So expect Pollyanna type posts and responses over the next few weeks that I do understand can be intensely irritating but they’re certainly better for me anyhow than the incessant tears. And sadly for my bank balance internet shopping might become more attractive too.
I was offered to go on a trial for Tremfrya (I think it is, probably mis-spelt it). However that would entail a monthly round trip of 400 odd miles to see the rheumy team and of course the possibility I’d be given the placebo. Sadly work wise (I work full time or at least try to) it probably wasn’t a great idea. It’s a pity as I would have liked to be have been involved in trying to get another drug for us, NICE approved. Indeed it would have been just fabulous to be just ‘involved’. But hey ho.
The thought process yesterday is that since I was a ‘responder’ to an anti-TFNa, it’s likely another anti-TFNa will work better. From my own research that seems the present current thinking treatment wise, worldwide. If it isn’t, do please let me know.
And wish me luck. I certainly need it right now.