Thank you Tntlamb. You made me smile. Lawyers can’t do stats. Or at least this lawyer can’t. But I know I’m not the only one, by a very long shot. Stats though, evidentially can always be manipulated to suits one’s own ‘debate’. Sadly. So even if I’ve no idea how the figures are worked out I’ve won a case or several on just stats. Even more sadly frankly.
But I get what you’re saying. Utterly. And thank you.
What I’ve discovered and what you’re saying is simply this. There isn’t yet enough cogent research on what works for PsA. If indeed we’re all suffering the same disease anyway. We’re still so much at the beginnings of treating it cogently. That I certainly believe. Yes there’s lots that help and calm symptoms but…there’s still no true idea of how to treat it. Hence my ire at protocols that aren’t proven, statistically or otherwise, to truly work. As, you so rightly say, we just don’t know yet.
I went to my rheumatologist last week. Tried to tell him for the upmteenth time I don’t suffer significant joint issues but tendon issues instead. And huge fatigue issues. Told him my feet are the barometer. But actually it’s really tendon issues that incapacitate me. As in I’ve had pain like daggers in both my bum cheeks, since I last him in June which necessitated osteopathic treatment. He looked at my hands and said I was fine. I haven’t complained about my hands since I first saw him in March. My hands presently and so for some significant time at least from May, are fine. I’ve repeatedly told him that too. I’ve got the beginnings of trigger finger which has settled into a nodule that’s doing nothing presently other than just being there. He’s never physically examined me, actually. He’s a nice guy. We have fascinating intellectual debates. I might get seduced by that too. But until your post tonight, I didn’t think to question him that much about the rest. Now I will.
But I’m doing something else presently. A homeopathic treatment, presently only available in Ireland called the Collin’s Treatment. Traveling to Dublin once a month for the day. I’ve certainly had several days and now nearly several weeks of relief as a result. Or so I believe. I still have my stupid job issues and so I know my stress levels are also through the roof. But my gut tells me it’s helping. I still take a 5mg steroid once every second day or sometimes once a day and some Naproxen when needed. But I have more days than not now of being able to walk two hours in the woods on rough terrain. That to me is bliss and indeed so aids my sanity.
So I’m either going through a remission or starting to. Or the Collin’s Treatment is helping. Or potentially I don’t have psoriatic arthritis anyway since no coherent tests show that. Or maybe I just have palindromic arthritis, like my rheumatologist initially said. But does palindromic present just like the classic swollen digit stuff of psoriatic arthritis? I don’t think so.
But whatever. We, our medics, and the rest, as you said, simply don’t know enough. So if we don’t collectively know enough, well then why the protocol? Certainly many are helped by it. But certainly too, far too many aren’t. Certainly too, too many suffer side effects that make it too difficult. Certainly too in my world at any rate the research is significantly divided on its helpfulness for PsA. So why on earth now, in today’s world, is this protocol still worth this slavish adherence to it.
That begs another question. Why is rheumatology so idiotically imprecise still? Or rather why is a total autoimmune response (like it seems I’ve suffered and like I guess many of us suffer) still so utterly poorly understood so that its pathway can’t be medically mapped and even identified coherently?
Years ago I was a defendant lawyer for mass work related upper limb disorders claims. It was fashionable in those days especially in factories or when we all started typing on computers, lots. I chose experts who were hand surgeons. The claimants or rather their lawyers chose experts who were rheumatologists. The hand surgeons won given their evidence. The rheumatologists didn’t as they simply had no evidence. They still don’t, sadly. Some of those claimants might have had PsA. Who on earth knows?
There’s still little coherent evidence of PsA. Certainly I exhibit little other than anecdotal stuff. No test, blood or otherwise shows I’ve PsA. I’ve slightly raised CCP but that was explained to me only (and sadly) by the fact I gave up cigarettes last year. But thank God I did. I’ve got nothing else other than my symptoms and some digit but not painful digit and feet and initially hand swellings which only started after my bunion operation last October to tell me or show me (or indeed anyone else) I’ve got PsA. But the tendon issues from my hands initially and my feet most certainly also initially and from my bum, more latterly, from my lower back are or were just soul destroyingly horrendous. PsA it’s said, can affect one’s lower back awfully. I’ve had lower back problems for donkey’s years. Almost as long since I first suffered skin psoriasis. So I just kept changing my mattress. It came and it went but this is the first time I suffered such sciatic type pain but only centred in my bum cheeks. And it can alternate. Maybe though I just need another new mattress. Who on earth knows.
It’s asinine on that basis, surely, that I must adhere to a DMARD protocol isn’t it? With such side effects? Makes zilch sense to me. Will always do so unless I see evidence. Proper cogent and rigourous evidence. To date I haven’t yet been privileged to see such evidence. I’ll keep searching though.
