I’m sure I’ve banged on at least once or twice on this blog about how important it is for the patient to manage their own illness as much as possible, and how important it is to keep a track yourself of your blood test results etc.
Weeeeeell, I’ve had this dratted disease for over ten years now and for quite a lot of those years I assiduously kept track of my blood test results, which never showed anything in all that time. And eventually, what with a change in the system that meant we only see the Rheumy nurse once ever three months, and they stopped issuing booklets with the results in, and given that the results never showed anything, I stopped looking. They’re available to me on line but I just didn’t bother.
So, fast forward to my last flare, not that long ago, a couple of weeks ago in fact, when the doc told me my bloods were up and I said ‘But that never happens’, turns out it happens more often than i thought.
I mentioned in that last post that my hospital appointment had been cancelled, and they originally said the next date was July (!) but then I got a call to say they were putting in a clinic to make up for the cancelled one, and that was last week … so off I toddled dutifully to the hospital. As could be virtually guaranteed, although my knee played up slightly the day before the appointment, it was fine on the day – thankfully the steroids had done their job!
So I went in and found the previous registrar has now moved on to bigger and better things and a charming young lady doctor was there instead. I told Dr Delightful that I’d had a flare the previous week but now things were much better, and that surprisingly my bloods had actually been slightly up, which never happened!
‘Oh no,’ said Dr. D, ‘that’s not right.’
‘Huh,’ i said intelligently, ‘well that’s what the GP told me.’
‘Oh no,’ she said, ‘they have been up since last May.’
‘Yes indeed, in fact in August the ESR (normal range up to 12) hit 35, which is pretty high.’
Oh look, August, what a coincidence – July was the previous time I had a flare and the GP decided in his infinite wisdom not to issue steroids, but just to give me opioid painkillers (which were useless.) So then the bloods are way up in August and what does the GP do about it? Makes a note on my records that says ‘abnormal but expected’ and leaves it.
(I didn’t find that out until today when I went online to check up n my notes and see what all these results had been.)
I think what happens is that the GP sees the other tests are normal and goes, ‘Oh, it’s only ESR …’ <Sigh>
Anyway, Dr Delightful decided this really wasn’t on and ‘under control’ does not mean having two significant flares per year, so she has increased the dose of methotrexate to 20 mg instead of the previous 17.5 mg.
Here’s the thing though – I’ve had two flares a year for ever – including the last two or three years when I’ve been at 17.5 mg methotrexate but the bloods were OK . The previous registrar was never interested in putting up the MTX … was it because the bloods were OK and I wasn’t flaring when I went to the hospital, or is it just a difference in attitude between the two doctors? I guess the only way to find out is to wait and see … IF I start taking the increased MTX and my blood results go back to normal but I’m still having significant flares, will Dr Delightful say, ‘Oh, no, you’re fine, stick at this dose’ or will she say, ‘Well if you’re still flaring, we’d better put it up or try something else?’ I’d like to think the latter but I have my doubts.
It seems to me there is far too much reliance on blood results and not enough on patient experience, but what can you do?
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