Guess who called me just a half-hour or so after I called them? Yes, the helpline! I immediately apologised for my rather grumpy message and the nurse then said she hadn’t actually heard it – just been passed on a note to call me. Darn – could have saved myself an apology! <Grin> So I basically told her what I’d said, only less grumpily, and she said she’d pass the info onto the registrar who I saw last, eight weeks before, and if he wanted to up the methotrexate then she’d call me back, otherwise not. She was very pleasant and not at all as brusque as I’ve made that sound – and of course she wasn’t the dreaded voice of the answer-phone message, who’s a nurse I’m not fond of! Anyway, she didn’t phone back, and that was anticipated as since the increase in MTX was only 8 weeks ago it hasn’t officially had a chance to work yet.
I thought it was interesting that the nurse didn’t offer any nursing tips – but perhaps she figured with seven years or so of arthritic knee behind me I should jolly well know what to do by now – which, frankly, is quite true! And she also said that I should call back if I found things not improving or getting worse – which I now feel much more encouraged to do than I did before after my one and only contact with the helpline seven or eight years ago, when they took two or three days to get back and then told me to see my GP!
Well I’ll give ’em that, he called very quickly… but he started off slightly fixated on the bloody helpline. I explained the problem and got, ‘Do you see the rheumatology nurse regularly?’ I said, ‘My next appointment is May.’ He said, ‘Yes, but what about the helpline?’ I said I hadn’t spoken to them this time but their usual response was, ‘Call your GP’ so, after checking my blood tests from the end of December and finding them ‘slightly elevated’ which was news to me, he agreed to a pred taper again, slightly grudgingly, ‘but please do call the helpline nurses. They are the experts in this.’
So I’m afraid I called the helpline and left the sort of message that guarantees no one will bother to call me back. Oops! It wasn’t deliberate but I’m in pain, tired, headachy and generally riled! I phoned up and got the usual, ‘There’s nobody here. I’m bored to death. You can tell by the tone of my voice, can’t you? If you really must speak to one of us please leave your telephone number, hospital number, date of birth and name and if you’re really, really lucky, someone might get back to you in the next couple of days.’ OK, OK, that’s not EXACTLY what it said, but honestly, it was ‘within 48 hours’ and I kid you not about the instantly recognizable tone of voice either! So I left a message along the lines of, ‘This is Polly Penguin, hospital number xyz, day time telephone 01234 567891, date of birth blah blah, I’m having a flare … I’ve contacted the GP and they’re giving me a pred taper but they’ve told me to contact you so I am. Good bye.’ Oh dear. Yes, I regret it now! It pays to stay on the good side of these people … but hey, I won’t hear from them I don’t suppose, and I won’t see them till May when they’ll have forgotten all about it.
If you remember my last brush with the helpline, you’ll know why I feel this way – but it MIGHT have changed since then, even if the phone message hasn’t.
Happy New Year everyone. I hope you all had good and healthy (as possible) starts to the New Year. I had a lovely Christmas and New Year – very relaxing, Christmas at Mum’s and New Year at ours with Mum and an old friend from uni… and no arthritis problems to speak of! Hurrah.
Unfortunately I can’t say the same now. I’ve been flaring since Saturday morning (it now being Tuesday morning) and last night the flare ramped up a notch from ‘flarette’ to the real thing so I’m sitting waiting for a call back from the doctor.
In the meantime, my nurse appointment that should have been 5th February has just been postponed by the hospital to 6th May – although I can always call the helpline, for what it’s worth, between times. It actually makes more sense to have it in May as that puts it slap bang between my last and next consultant appointments, and also if I see them in February and say ‘No change since you upped my methotrexate’ they’d probably just shrug and say ‘It’s barely been three months dear’, whereas in May it’ll have been six and if it’s really not working, then it’ll be clear by then.
As always the worst of it’s in my left knee but I’m also having ‘fun’ with my left elbow, right ankle (makes walking interesting!) and hands, especially at night and of course first thing in the morning. Fortunately I can still type so ‘putting beans on the table’ is not a problem yet. However, I foresee a day off in the near future to rest up the knee, as it’s impossible to do that while sitting at the desk in the office.
I think I need to make a list of the ‘aids’ that I can use to help when I’m having a flare, and then remember (HA!) to refer back to it so that I actually bring into the office things like the cooling spray, the stock, the neck pillow etc. etc. … none of which I have with me today of course! I’m also missing one of the junior penguins are her young daughter has flu so she’s had to take time off (quite rightly too!) to look after her … so I’m battling deadlines with 1.5 out of 3 of us down. (I’m counting myself as the 0.5!) I just hope the other ‘JP’ turns up for work today!
On the bright side, this being a Pollyanna blog, I’m mighty glad this doesn’t happen too often! My last flare was the end of September, only 3.5 months, but I know, and sympathize with, people who have to put up with this level all the time.
Here’s hoping the doc calls back SOON and gives me a pred taper (or something even better) without seeing me, like last time!
Tags: arthritis, consultant, doctor, flare, hospital, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!
Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.
For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!
For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!
The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.
He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!
Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!
Tags: arthritis, enormous cat, flare, knee pain, RA, RA flare, Rheumatoid arthritis, rheumatoid arthritis (RA), Whitby
Well my knee is very definitely better – From being barely able to hobble across the room, one predniselone taper later and I’m almost back to normal – I’m back at work, doing my lunch-time walks again, carrying on as normal … almost. The things is I’m getting twinges in that knee after walks, and I haven’t dared try exercise other than walking yet, and it’s generally more painful and tender than it was – I still have huge tracts of time when it doesn’t hurt at all, I’m delighted to say, but it probably hurts more and more often than it did pre-flare. I don’t know yet whether that’s because things are still settling down after the flare – it’s been nearly two weeks now which is long for me but not long in the scheme of RA things – or whether there’s been some damage done to the knee and this is the way it’s going to be from now on.
Here’s hoping it’s the former!
As to non-RA related stuff, I’m very sad to have to say that ‘Enormous Cat’ died a few weeks ago. We miss him enormously! Well, Hubby and I do. Tiny Cat 2 isn’t the slightest bit bothered! ‘All the more crunchies for me’ I think is her attitude.
On the brighter side, we had a fabulous holiday to Whitby, where we were lucky enough to get a room upgrade in the very nice hotel and had a generally lovely, relaxing time, and, in spite of seriously steep hills, the RA pretty much behaved itself. I did wimp out of a really steep and windy trip up to see a waterfall … but it wasn’t as though we’d planned that anyway. We just stopped in a village cafe for a coffee, got chatting to a couple and their very friendly (and perpetually hungry dog) and he said ‘Have you been up to see it yet?’ And we said ‘See what’ and it turned out there was a fairly famous waterfall there. I did manage to see the wonderful Whitby Abbey, which I had been really wanting to visit for years.
The Yorkshire Moors were magnificent, and yes, we did have some good weather too, in spite of the Abbey photo above with the foreboding clouds!
And Castle Howard was deeply impressive … although the only bit I really liked was the Arts & Crafts Chapel – amazing! (The ‘new wing’, built in 17-something, was also nice, but the neoclassic earlier part of the house I personally found rather cold, although Hubby loved it!)
All in all a very fine holiday – but could have done with another week!
Tags: arthritis, Arthritis Research UK, exercise, fatigue, flare, inflamation, knee pain, National Arthritis Week, pain, R.A., RA, rheumatoid, stiffness
It’s National Arthritis Week in the UK from 12-18 October and Arthritis Research UK are running a ‘story wall’ in its honour. My story (in 250 characters, which is a bit mad, but there you go, we’re the Twitter generation!) is up there somewhere on the wall – or will be soon. Why not go and put yours up too? You can see the wall here and put your own story up here.
10 million people live with Arthritis (in all its various forms) in the UK and Arthritis Research UK do a great job in supporting us, so I’m very happy to support them with their efforts for the week. They not only fund research, but also provide patient talks around the country so that we can find out what’s happening research-wise. Hubby and I went to a very interesting one a couple of months ago given by my very own rheumatologist – not that he recognised me – after, I haven’t had a six-monthly appointment for nearly two years, as the hospital keeps cancelling them – but that’s a whole nuther story! Posting about the stuff he was talking about is on my very long list of things to do!
I got latched on to by a very pleasant lady who tried to assure me that all I needed to do was take cider vinegar and honey to be cured. Strange that she was there and very clearly not cured, and yet still spouting this stuff. Funny, things people.
Anyway, I digress – please support Arthritis Week – there’s loads and loads of stories up on the wall already but the more the merrier, and it all goes towards helping arthritis research.
Tags: arthritis, doctor, GP, RA flare, rheumatoid, Rheumatoid arthritis
Poor neglected blog! It’s been neglected till now because RA has been under control and I’ve not had much to say, and now it’s going to be brief post because I’m typing on the iPad mini, which ain’t easy when you’re used to touch typing!
So so why not use the PC? Because I’m having a great big flare in my left knee and can’t comfortably get my leg under the desk! This also means I can’t work of course! Very frustrating! It started Monday night, I had Tuesday off work and went back Wednesday when it was quite a bit better. Probably a mistake as yesterday (Thursday) it was a whole heap worse.
i phoned the doc and spoke to, I think, a locum.
‘What can I do for you?’
‘I’m having an RA flare in my knee and it’s about the size of a football.’
‘Oh?’ <slightly sceptical voice>
‘I do have RA! Had it about eight years!’
‘oh, right, yes, of course …’
Oh good, he’s finally read some notes!
‘Well’ says the doc, ‘What do you normally do for that?’
‘You give me a prednisolone taper.’
‘Ah, when did you last have one?’
The honest response would have been ‘Duh, I dunno!’ I’m just hopeless with dates! I know it was a while back so I said ‘Maybe a year ago?’ For all I know really it was 2 or 3!
‘i can’t find it on the system.’
‘good grief! I’ve hardly been in the surgery this year! There can’t be that many visits to look through!’
‘Oh, I’m not in that bit. I’m looking at medication and all your monthly repeats are coming up of course.’
I bit my tongue and didn’t say ‘Well go into that bit then.’ I didn’t want to antagonise a man who was (hopefully) going to give me drugs!
‘Hm, I can’t find it. Do you normally start the taper with 4 or 6 tablets?’
durr… I dunno! ‘Four? … Maybe? … I think … Not sure.’
At this point I expected something on the lines of ‘you’d better come in and I’ll look at it and make an informed medical decision’. Instead I got, ‘Well let’s try four. I’ll send the scrip over to the pharmacy for you.’
I have to say he was very pleasant and I’ve shortened the nice chat we had drastically due to iPad typing, but still unsure whether to be grateful to doc for listening to and believing (eventually) the patient, or horrified at the laissez faire attitude! As it saved me a very uncomfortable trip to the surgery I think I’ll opt for gratitude! Now I’m just sitting with my leg up and hoping the steroids do the trick!
I’m missing an art exhibition I really wanted to see, a workshop on identifying dragonflies and possibly a painting class, over the coming weekend, but I’m catching up on lots of reading and doing some crochet, which I’ve not done for ages, so there are good things ….kinda!
Tags: dentist, dry mouth, R.A., RA, rheumatoid, root treatment, Sjogren's syndrome, tooth decay
I’m on my own in the office today, but at least things have quietened down a tad – both work and flare! I’ve been flaring for the last couple of weeks, somewhat on and off but more on than off. On top of that last week I had THREE dental appointments (each at an hour minimum out of my working day, including the travel) to FINALLY finish off this root treatment that’s been going on since the time of the accident.
On the bright side, the root treatment is DONE! On the not so bright side, in spite of good dental hygiene, decay has been much faster than the dentist would have anticipated and he blames (‘without a doubt’) dry mouth caused by lack of saliva production, since saliva protects teeth from decay. Who knew? Certainly not me! I knew I had dry mouth, often worse at night time but bad in the day too, and on and off just like flares are on and off, but I had no idea that it could cause problems other than me thinking, ‘I could do with a sip of water’.
There are two possibilities I can think of – and no doubt some I haven’t thought of too! One is that I have secondary Sjögren’s Syndrome, which often associates with RA and causes dry eyes and mouth – I’ve not bothered to ask anyone about this because I don’t have dry eyes, and as far as I can tell the test for it, at least in the NHS, is an eye test so I’m sure I’d come out fine! The other possibility is that the Lansoprazole that I take as a stomach protector, to protect against the side effects of the other things I take for the RA, has a number of potential side effects, bizarrely including all sorts of stomach problems (seems bizarre to me for a stomach protector, but there you go) and also DRY MOUTH!
I may be wrong but I can’t imagine getting much out of the GP on this so if I ever have another hospital appointment (the last one having been postponed umpteen times by the hospital) then I will mention it there.
If anyone has any other thoughts or theories I’d be most interested to hear them!
Tags: Creaky Joints, EULAR, NRAS, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Last year I attended the Future of Health 2014 Conference, having applied to be a ‘citizen journalist’ and tweet about the event. There was a big focus there on listening to the patient, and that’s certainly not an isolated event. The excellent Creaky Joints report on the EULAR conference makes it clear that this is a much bigger thing. The thing that especially caught my eye was that FINALLY we’re being listened to regarding fatigue. Fatigue is not correlated to disease activity, a study by the UK’s National Rheumatoid Arthritis Society, which I participated in by answering a survey, found; in other words, I can have mild, controlled RA and still be bloomin’ … erm … exhausted the whole time! There’s a good chance that if you’re reading this blog you’re an RA sufferer, and if you are there’s a very good chance you already knew this, but I’m quite sure most of the medical profession did not – and does not, and it is through listening to patients (or patient-led societies) that they are finding out.
Combine this European-wide event with all the patient activity at the American College of Rheumatology event last year, and the fact that even in my little provincial hospital the consultant was genuinely wanting my opinion on things last time I saw him, and I really do feel there’s something positive going on.
I know it won’t be perfect, I know there are still plenty of medics out there who don’t understand RA at all, and even the specialists will often think what’s on their charts is more important than how we feel, but it certainly seems to be a move in the right direction.
The NRAS survey highlighted in the Creaky Joints report indicated that 66% of patients surveyed (in the UK) were never asked about their fatigue and 79% said it had never been measured. At the moment though, there is no generally accepted measurement of fatigue, so any fatigue studies are a bit hard to take seriously. The next stage should probably be to agree a way of measuring fatigue so that studies can be sensibly compared and conclusions reached.
And now NRAS has another survey – this one is all about how much input or influence RA patients have in their treatment decisions, so if you’re based in the UK and have been diagnosed in the last ten years, go ahead and fill it in; your views could form part of the next EULAR conference; who knows!