Tags: methotrexate, RA, Rheumatoid arthritis, MTX, ear ache, infection, immunosuppression
I hope those of you in the UK appreciate the Sun style headline! All will become clear shortly, but let’s start with a once upon a time, like all good stories. Once upon a time, two weeks ago in fact, I had ear ache pretty badly … I called the doc, saw the nurse practitioner, got antibiotics for an ear infection, was told not take my methotrexate that week so it didn’t fight the antibiotics (so to speak), took the antibiotics, got better (but not 100%) and that should have been the end of that … only it wasn’t.
Guess who forgot NOT to take the methotrexate? Bad Polly Penguin!
So anyway, Monday night the ear was niggling quite badly again (and I’d been off the antibiotics for a few days) so I thought, right, I’d better call the doc tomorrow and not take the MTX. Of course yesterday morning the ear felt fine. ‘Still call the doc,’ said wise hubby … and I really, really meant to, but we were very busy at work and I completely forgot. The ear was fine all day. So I thought right, better not delay the methotrexate any longer and I took it last night (and had a most appalling stomach upset, incidentally!)
‘Still call the doc about the ear,’ said wise hubby again, ‘you don’t want it flaring over the weekend when you can’t get a doc,’ so I thought I would … and in fact the ear was niggly again last night and this morning, so at least that reminded me.
Got through to the surgery very quickly. The system is normally you speak to the receptionist, they get a doctor to call you back and then, if the doctor feels the need, you go in and see them. In this instance, to my amazement, as soon as I said what the problem was the receptionist said, ‘Can you come in now?’ So I did. Fantastic, I thought – red flagged because of my immunosuppression – I didn’t think they did that.
And now, finally … for anyone patient enough to have read this far, we get to the baby doc shock! I went in and saw the doctor, who I think is a locum (they mostly are as we have terrible recruitment problems – heaven knows why, it’s a lovely part of the world). She must have been just out of training. She was really lovely, hadn’t had the softness knocked out of her yet, excellent bedside manner, sweet as pie (much sweeter than the original ‘Baby Doc’) and very helpful. She checked both ears, checked my temperature, asked about the history of the last couple of weeks … confirmed I actually had some infection in both ears (which was a surprise) and asked me to come back in a week or so just to make sure everything was OK after I’d finished the antibiotics. All well so far.
‘Shall I take my methotrexate next week, while I’m taking the antibiotics?’ I asked. Baby doc looked thunderstruck. Heck! So much for the red flag for immunosuppression – she didn’t even know I was on methotrexate. ‘I’m on methotrexate for RA,’ I elaborated. ‘The nurse practitioner said not to take it last week because of the antibiotics, so should I take it this time or not?’ (I admit I failed to fess up to having taken the MTX last week!)
‘You’ve got RA? How long have you been on the methotrexate?’ she asked.
‘Oh ages,’ I said cheerfully.
‘But you’re so young for RA!’
My turn to be thunderstruck. Yes, I KNOW GPs have to know a smidgen of everything and there’s a heck of a lot of everything out there, so they can’t be expected to be experts on anything; yes, I know that she’s only just out of nappies … sorry, school … sorry, college; yes, I know it’s a commonly held misconception … but … well, can I just say aaaaaaaaaaargh.
I didn’t say aaaaaargh to her. After all, she’d been very nice and helpful and I didn’t want to antagonize her … but I did point out that RA can hit at any age, and that mine had started nine years ago when I was 39. Unfortunately, perhaps, I didn’t really push the point … maybe I should have done. She’s probably still a ‘GP trainee’ and might have found the information valuable. Thing is, I was kind of in shock that she’d made that comment and I just didn’t react fast enough.
My apologies for the whole ‘RA’ and arthritis ‘community’ – I feel that I’ve let us down!
Tags: arthritis, Arthritis Care, Arthritis Research UK, chronic pain, cloudy with a chance of pain, RA, Rheumatoid arthritis, weather
Isn’t that a fantastic title for a study of chronic pain to see if it is/might be related to the weather? Well, if you’re in the UK and have arthritis or chronic pain and smart phone you can do more than just enjoy the great name – you can be part of the study!
All you have to do is agree to participate and download the Umotif app with the code word ‘cloudy’ – allow it to know your location and fill in the details (which really won’t take more than five minutes and probably less) each evening. I think you’re supposed to be able to set a reminder in the app, so that your phone will ping and remind you to complete the survey … as yet I haven’t worked out how tough!
To find out more about the project, funded by Arthritis Research UK, you can go to their website.
This sort of study needs lots and lots of people to really make it work, so if you’re eligible please do join in – it would be fascinating to see if any link to the weather is established. And as the article about this in Arthritis Care’s Inspire magazine points out, if nothing else the study might get a few headlines about arthritis, which ain’t that easy to do!
Even better, this really is ‘Citizen Science’ – anyone who wants to can explore the data, look for patterns and, if they find any, submit their ideas and hypotheses! Cool!
Tags: art, carla, Rheumatoid arthritis, wren
Sometimes I feel a wee bit isolated over this side of the pond – all my American blogging friends are meeting up for health blogging conferences and things and I’m stuck over here … but how cool is this?
Not only a card signed by all my ‘US mates’ who were at the latest conference … a really lovely thought of Carla’s (from Carla’s Corner), but also a wonderful picture of me, accompanied by some little friends doing one of my favorite things, yomping about the British countryside (in spite of a dodgy knee, presumably, given the stick) … and by our very own Leslie Vandever, better known in the RA community as Wren, whose art I just love!! I really will treasure this.
But this didn’t just arrive through the post … it was hand delivered by Carla, who came all the way from the States (via London, Edinburgh, and Glasgow as you do) to meet up with me in Norwich and present it to me … OK, so she didn’t exactly come all the way from the States to present it to me, but I’m mighty grateful that she came all the way from her London vacation base … and a day after returning from Edinburgh. We Brits thinks it’s a long way from London to Edinburgh but it’s apparently nothing to an American whose home state is five times the size of the UK … as Carla’s hubby (who reminds me a lot of mine!) pointed out.
They also treated me to a lovely lunch and thanked me for coming … huh? I’ve driven half an hour each way, and jumped on a bus from the park and ride … and taken a day off work* (woohoo) and they’d taken a day out of their vacation and a 5-hour round trip to buy me lunch and deliver this wonderful card and they’re thanking me?! So once again – THANK YOU CARLA AND JACK! And thank you Wren for the wonderful card, and thanks to all you RA bloggers at the conference for the singing of it! Hi to Cathy, Eduardo and Brit, whose blogs I already know, and the rest of you I look forward to ‘meeting’ on line in the near future … now I have your blog details to hand in the card!
It was such fun meeting up and none of those awkward silences that sometimes happen when you meet with people you don’t know well … I think we could have carried on talking for hours, but they had a train to catch and I was supposed to be going back to work.*
Thanks again guys -and maybe one day I’ll get out to the States and meet up with some more of you!
*It was supposed to be part of a day off but it kind of um … extended …
Tags: arthritis, Barcelona, gluten, gluten free, RA, Rheumatoid arthritis, Spain, stomach
So I did gluten free for a month before we went on holiday to Barcelona – where we had a FABULOUS TIME and ate all sorts of wheat-related products! I can safely say, I think, that it made absolutely no difference to my arthritis, which carried on being mild to moderate and twinging and whinging in exactly the same joints as usual. However, I’ve always had a dodgy stomach for years, the worst thing being wind – and almost as soon as I’d gone gluten-free the windiness massively reduced – almost entirely stopped in fact. That’s a big thing for lifestyle, if not for RA!
So then we went to Spain – wow, warmth, sunshine, fabulous food … but I didn’t bother to attempt gluten free while I was there, while at the same time not going out of my way to eat gluten! We had a pastry of some sort with a fruit salad for most breakfasts, a roll with some dinners and sandwiches for some lunches – we also walked very nearly walked my feet off … even hubby was getting a bit tired! I’ll post some photos when I get them on to my PC, but so far no time this week! We had a wonderful time and saw all sorts of amazing things and … with one notable exception, possibly caused by too much really exceptional paella, my tummy was fine! However, this fits in fine with the possibility of a mild intolerance rather than an allergy – no reason for stomach to react instantly in a bad way.
When we got home I’d run out of gluten free cereal and we weren’t going shopping for a day or two so I had bran flakes again – BAM! Stomach back to square one! Hmm, interesting. No more bran flakes I guess! So I then decided to play this week as gluten free cereal but not to worry about the other food and see how it goes. So far … not fantastic. I might well be going back to (almost) gluten free quite soon!
Tags: arthritis, hospital, injection, methotrexate, MTX, presription, RA, Rheumatoid arthritis, rheumatoid arthritis (RA)
I got an invoice in the post yesterday from the hospital, ‘Charge for prescription fee’. I haven’t had a prescription fro the hospital – what the heck are they on about? Then I thought, ‘Aha – it’s probably for my appointment on 8th Feb – the injection’ so I phoned finance and pointed out that I had a pre-payment certificate, expecting a whole load of argument about, ‘Oh, we don’t deal with those’, but no – it went very smoothly and she processed it through with the pre-payment certificate- all fine.
Then I took another look at the invoice for some reason – not sure why – and read it properly. ‘Charge for prescription fee 17.01.16 – as no credit terms are offered, please remit by return. If no payment is received within 30 days the invoice will be passed to our debt collection agency.’
Now I was pretty riled and slightly confused – but imagine how some poor little old lady would feel receiving that – OK, it’s not a large amount of money but the aggressive tone is enough to give you palpitations if you’re that way inclined. (I’m not, luckily – it just made me cross!) So I phoned the finance department back and said, ‘Oy, what’s this about 19th of January. I wasn’t there on the 19th of January.’ only (slightly) more politely. ‘Just a moment, I’ll check …’ <Hold music> ‘Yes, that’s right, it was processed on the 19th of January.’ Deep breath … ‘Yes, I know that … but I wasn’t there on the 19th of January so what is this for?’ ‘Oh … er…. we’ve only got the same info that you have – we’re just asked to process the invoice. So you didn’t have an outpatient visit?’ ‘No.’ ‘And you didn’t visit A&E?’ ‘No …’ Did I not just say I wasn’t there? Was that not clear enough? Obviously not. ‘Oh … well, would you like to check with pharmacy?’ So she gave me the pharmacy number and said, ‘But don’t worry, it’s processed on your per-payment certificate anyway.’ And I’m afraid that riled me even more – typical number-cruncher attitude – it doesn’t really matter what it’s for as long as the numbers balance. But I didn’t say anything except a polite thank you for the pharmacy number.
So I phoned the pharmacy – ‘Oh yes, it’s for an injection – it was sent to your GP on the 19th of January.’ ‘
‘It better not have been – because they can supply their own quite handily I believe – they don’t need them sent from the hospital. Are you telling me I’m being charged for something I’m not going to get because my next appointment is with the hospital, not the GP? Or is it perhaps a dose that’s been sent to the hospital rheumatology department, because I do have an appointment with them on 8th February.’ And of course that’s what it was. Hurrah.
Is it really that hard to put on the invoice ‘For hospital methotrexate injection on 8th February’ and take out the whole ‘You are an evil person who hasn’t paid instantly for something you didn’t even know about’ bit? Apparently so. Grrr …
And that only took 20 minutes to sort out and was a one-off. A very intersting post from Carla over at Carla’s Corner, on the time needed to cope with a chronic illness. I have a tiny weeny fraction of what she has to cope with and it still gets me grumpy and slightly stressed.
Tags: aches, arthritis, fatigue, flare, joint pain, knee, methotrexate, pain, RA, reaction, Rheumatoid arthritis, stomach upset, stress, tiredness, work
Well the knee is certainly a whole lot better and I’m now tapering off the steroids – I ended up with 11 days on 40 mg and then a taper down to nothing. The bad news is, not surprisingly, it’s not 100% better yet, and so far I haven’t managed a full day’s work since this started. Fortunately (not from a financial standpoint, but otherwise) we’re not that busy right now. I’m not too worried as that’s often the case in January and there are things simmering away that should come in over the next few months, and it does mean that if I just can’t manage a full day then so be it. At least the boss can’t get cross with me! (Having said that, I’m probably my own harshest critic, so I guess I can get cross with me!)
On top of the whole knee thing, yesterday I had what was pretty much certainly a full-blown methotrexate-related stomach upset, so I’m very glad now that I’m going on the injected stuff in a couple of weeks! Feeling OK today, if a little tired, but I was a complete wreck for a while last night – thank heavens for Imodium is all I can say!
Still, even if I don’t last all day today at work, I’m confident that I’ll be doing so by the end of the week, so things are on the up! I hope things are going well for all of you too.
Tags: arthritis, flare, joint damage, joint pain, pain, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
Yay – the swelling has pretty much all gone and so has the inflammation – I have pretty much full ‘bendability’ back in my left knee – woohoo … but yes, I’m still being careful! Of course if you have an injury, swelling and inflammation happens for a reason – to take more blood to the area to repair the injury, and to stop you moving it in ways that are going to cause the injury to worsen. Now in RA, given that it’s those helpful wee blood-cells that are actually doing the attacking and causing the injury, it kind of confuses things a bit, but nevertheless the swelling DOES stop you moving the joint in ways that are likely to cause more injury … and when the swelling’s gone, so is that warning and protecting system. And one thing hasn’t gone yet … the pain! Luckily the pain isn’t there all the time for me, which is great – I’m very, VERY glad about that – but it does mean that while I’m sitting at my desk pain-free and want to leap up and get a cup of coffee, it’s rather important to remember not to leap unless I want to end up an embarrassing heap on the floor!
Tags: arthritis, methotrexate, MTX, RA, Rheumatoid arthritis
Hmm, how many times have I read posts about self-injecting drugs and breathed a sigh of relief that I don’t have to do that? Too many to count. Well, that time has ended, my friends – I will be injecting my MTX in three weeks’ time, after my ‘education appointment’ with the hospital. Mind you, I gather from a small amount of on-line research that this is a very easy subcutaneous (under the skin) injection; not the sort of nasty intra-muscular injection that biologics users have to endure. It seems to be a simple (?!) question of using something like an epi-pen to squirt the MTX in with, but I will find out more when I go and get educated. Here’s hoping I get the sweet nurse I’ve been speaking to on the (yes, actually helpful) helpline, and not the bored and horrid nurse I’ve never liked from day one. We shall see. Either way I will endeavour to be a good girl, listen hard, take it all in and get it right first time. (Not getting it right first time could be messy!)
The reason I’m moving to this course is that I sometimes get stomach problems that may or may not be from the MTX and that many people who take the dose orally don’t get the full benefit as some of it is digested, rather than moving on to the bits it needs to go to in order to work. By injecting, I can keep to the same dose, rather than increasing and risking the side effects that go with that, but hopefully get more benefit from the dose as all of it will go straight to where it’s supposed to go. That’s the theory, anyway. Apparently there are no other advantages or disadvantages of injecting – other than the obvious mild unpleasantness I’m assuming for the injecting!
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!