Well if she’s not even examining you fully, the joint score just can’t be correct, can it? So obviously your DAS score isn’t valid either. Also she should be distinguishing between which joints are actually swollen and which are just tender, versus which are just fine. I don’t get a DAS score, so obviously that didn’t matter for the prescription of biologics in any event. I get the joint count out of 68, a PSAI score for skin psoriasis (mine isn’t there anymore as I haven’t had active psoriasis for decades) and a global assessment done by both the patient and physician showing what each of us thinks.
A proper physical examination should actually start at your head and work its way down with attention to your jaws, clavicals, shoulders elbows, wrists, every single finger joint, your hips knees ankles and every single toe joint. It should check for things like tennis/golfers elbow and issues with your Achilles tendons too. Both your fingernails and toenails should also be checked.
My issue with my appointment in October was due to an inept physical examination by a nurse which told my rheumy (a different one to the one I’ve seen previously) that I was better when it was clear to me I wasn’t given I now had hip problems (new to me) and left foot problems (also new to me). And it was that that made me lose my patience and write my letter. My experience at this hospital which is incidentally the RNHRD in Bath, (a centre of excellence for PsA) up to then had been remarkably excellent. The response to my letter made me cry, it was so abjectly apologetic. So I remain impressed.
I live in Kent but make the effort to travel there. The NHS allows me to be treated there. You’re going to Somerset, which is far nearer to Bath than Kent, I think you might have an excellent chance of being treated there, should you wish.
Each of makes our own decisions about what meds to take and indeed what to do when we feel things are going wrong. If I was in your shoes right now, I’d be making a complaint and holding fire on adding in new meds until you were at least properly and fully examined by someone who is competent.
I’m sad to say it’s down to the patient far too often within the NHS to make it work for them. It’s a fabulous service and we’re incredibly lucky to have it but, it’s certainly got its challenges and issues as we all know. So I’m quite a demanding patient (nicely) and just doggedly persistent. I let nothing go. I’m sure those treating me ‘sigh’ something rotten sometimes when they’ve got to deal with me. But it’s only me living my life so I’m of the view it’s consequently down to me to ensure I understand my treatment and further that those treating me do their very best. And if not I pull them up hard. It’s the only way I can get on with it. I also research as much as possible so I can understand as much as possible. And I question and probe. And if I don’t get to ask all my questions at the consultation, I write an email or letter after asking them. I’ve probably got ‘nightmare patient’ written all over my notes but I truly don’t care.
What I do care about is getting the best treatment I can from the best people I can access. And there’s excellent rheumys, perfectly good rheumys and utterly awful rheumys all employed within the NHS. Get yourself an excellent one as quick as you can.
As you know this disease just keeps on giving if it’s got a mind to, and if I was feeling this,
my poor rheumy would hear me ‘shouting’ exceptionally loudly all the way from Kent that I wouldn’t need to even write the letter.
I hope this helps.