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: doctor, methotrexate, prescription, receptionist, surgery
That’s doctor’s surgery, not a need to have surgery, I’m very glad to say!
I put in a repeat prescription two days ago, went in to collect it today, only to be told they didn’t have it in at the chemist. (The usual route is for me to deliver my requirements to the surgery, and they pass it on to the chemist, who is thankfully very nearby, for collection in 48 hours.)
So I went to the surgery and said, ‘I put in a prescription two days ago but they don’t have it at the chemist.’
‘Oh well, it can be up to 48 hours.’
‘It’s been more than 48 hours.’
‘Well it can be up to two days, if you put it in on Monday morning, it might not come out until later today.’
‘Why say 48 hours then? It’s been longer than 48 hours. Please could check on the system and see if it’s been done.’
Rather unwillingly she checked the system and said, ‘Yes, we issued it on the 19th,’ and sat back with a satisfied smile. ‘We issued methotrexate, folic acid, hydr… hy… hydrer … can’t pronounce it but we issued all that stuff.’
Deeeeeep breath … ‘OK, well they don’t have it at the chemist. What now?’
‘Can you go over to the chemist and check?’
Really deeeeeeeeeeeeeeeeep breath. ‘As I said, I’ve just come from the chemist.’
‘Well could you check again. It might be there.’
Well, it’s only up the road, not like I have anything better to do … oh wait, yes I do … never mind. Back to the chemist.
‘Could you check on the shelf please – the surgery say they issued it on the 19th. It’s happened before that it wasn’t on the database but it was on the shelf.’
So very grudgingly the pharmacy assistant checked the shelf. It wasn’t there. ‘Well it wouldn’t be,’ she said, ‘ it wasn’t on the database.’ I’m getting really tired of repeating myself at this point but I said, ‘It’s happened before. Would you mind ringing the surgery and telling them, or shall I carry on being a yo-yo and go back and tell them again?’
‘Would you mind going over? It’ll take us ages to get through to them!’ Well I had to concede that was a fair point so I went back over. By this time I had lost any vestige of patience i had. Funny, my mum thinks I’m very patient… but that’s just an indication of her extreme impatience!
I went up to the same receptionist, glared my most menacing penguin glare and said, ‘I’m back.’
‘Oh … it’s not there then?’
‘Funnily enough, no.’
‘But we issued it on the 19th.’
‘You said.’ More glaring.
‘Well have you had the methotrexate?’
‘No, of course not. I haven’t had any of it. That’s what I’m saying. It’s not there.’
‘Well …I can’t understand why they keep disappearing …’ HA! So it’s not just me this is happening to then, marvelous! Good old surgery ****’s up again! ‘Well, I’ll print it out right now.’
‘I’m going to run out of my medications by tomorrow night – I can’t wait 2 working days.’
‘Oh no, we’ll get a doctor to sign it and send it over this afternoon.’
So I’m waiting to see if they get it right this time – good job I have spare methotrexate as it takes the pharmacy three days to order it in!
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: Giulia Enders, gluten, gluten free, Gut, joint pain
So, I’ve finally jumped on the band wagon and I’m trying out gluten free. At first I thought, ‘Oh, it’s another fad like the Atkins diet, it’ll soon fade away, just as that did’ – and yes, before I get all the cries of outrage in the comments, I know some people still use it and find it good; I also know much of the ‘science’ behind it was debunked and that, like all fads, there are some people who find it useful but a lot of people just wanted to try out the latest thing, found it didn’t work for them, and it’s quietly disappeared out of the press etc.
I thought the same would happen with gluten free, even though a lot of people whose opinions I respect were trying it out and finding it useful. The tipping point was a couple of extra people I respect really swearing by it and a partial reading of Gut by Giulia Enders, a highly entertaining read (although only in small doses, which is why I’ve not finished it yet) about ‘the body’s most underrated organ’ – yes, it’s more than one organ but we’ll forgive her that as a translation error; the original is in German. She’s a ‘real scientist’ and points out the vital difference between gluten allergy and celiac disease (which are not the same thing, thanks Kate for pointing that out!), which I know I haven’t got, and gluten intolerance, which perhaps I have. She lists the possible symptoms for gluten intolerance: ‘digestive problems’, flatulence, headaches and painful joints. Without going into unnecessary detail, let’s just say I read that and thought ‘box ticked’ about everything there! So I ummed and urred about whether to give it a try and then put lots of unnecessary obstacles in my own way, because I didn’t really want to, and I especially didn’t want to find I actually had gluten intolerance. What?! No more cakes (except brownies of courses – everywhere loves to proudly advertise their gluten free brownies – not a special effort; the basic brownie recipe has no flour in it!) Also no more bread, crackers, matzo? YIKES!
Then I read what Saint Giulia had to say a bit more carefully. ‘Gluten sensitivity […] is not a sentence to a life of gluten avoidance.’ HURRAH! So I got some excellent advice on what was available from my gluten-free aunt, and gave it a trial run last week. The trial run involved cutting out my beloved daily breakfast bran flakes (yes, I know I’m odd but I actually LOVE bran flakes) and eating as normal apart from that, but noting what foods I normally eat did have gluten in so I could find alternatives and cut them out. (While my aunt’s gluten free breakfast sounded amazing, you’d have to be retired to have time to prepare it!) So breakfast is now simply a gluten-free cereal, nowhere near as tasty as bran flakes IMO but not bad. I hardly ever eat bread anyway although I do enjoy it, so for the gluten free experiment I’m just not eating bread – easy. Same applies to matzo although I normally eat them a tad more often than bread. I’ve replaced noodles with rice noodles (which will take a bit of getting used to on the cooking front – a big, wobbly gelatinous mass for dinner last night. (‘And that was just hubby,’ says hubby!) I’ve replaced our standard (oh God, we’ve gone middle aged and have a standard dinner every week) southern fried chicken, with a non-bread-crumb coated, but just as easy to sling in the oven, chicken thing. Where we used to sometimes have jacket potato with fish cake, which I always thought was a bit of a potato overdose anyway, I will now have jacket potato with tuna; hubby can still have his potato overdose. And finally, pasta bake – happily there is a gluten free pasta made with rice flour – it’s a bit odd but once you throw all the other pasta bake ingredients at it, it’s fine.
So now I’ve been gluten fully gluten free for all of four days – obviously no startling effects yet but I have seen some effects which may or may not be related.
So far no big difference as far as the joint pain goes, and I had a migraine last night so I’m thinking the headaches haven’t dramatically improved yet either (although maybe migraines don’t count as they’re not ordinary headaches), but the stomach-related stuff, again without going into unpleasant detail, is definitely improved. It’s not perfect but there’s a clear improvement. Whether it’s related or not I wouldn’t like to say just yet, but it’s improved.
And another thing that’s improved is not mentioned as a possible symptom of gluten intolerance, although it is listed as a possible intolerance symptom for other things. I’ve suffered from really awful catarrh (post nasal drip) for years and years, and that has dramatically improved too. Coincidence? Perhaps. We’ll have to wait and see.
And the great thing is that if it does make a difference, I don’t have to avoid all those nice gluteny things for ever; I just have to be careful and sparing … and probably stay off those bran flakes!
I’ll keep you posted on how it goes.
Local pharmacies, which have been hyped up over the past few years as the place to go for primary care (don’t bother your overworked doctor with coughs, colds, allergies, heart attacks, death – try your pharmacist first!), are now under threat from yet more government funding cuts.
The best write-up I can find is here at the Pharmaceutical Journal, back in December last year, but it’s only just impinged on my awareness because our wonderful, helpful, friendly local pharmacy has a petition going, which of course I’ve signed. I’ve also written to my MP and signed a parliamentary petition here, which is in desperate need of more signatures. This link also has links to a number of other information sources on this if you’d like to look into it further.
Of course you can only sign if you’re in the UK but I think I have a few UK readers and I hope you’ll support this with me!
We have very few amenities in our town and the surgery is in dire straits as always, but the pharmacy, which is a non-chain pharmacy owned and run by someone who worked for years in chains and saw everything they did wrong, is just wonderful. It would be really, really awful to see it go. We would be left (unless that closed too) with a fairly awful Boots chain pharmacy, and if that goes we’d have to travel out of town or put up with a central warehouse sending out prescriptions by post, with all the fun I can envisage that entailing – errors, refusing to send to work which would mean I’d have to wait home on work days for my scrip, etc. etc. Not to mention the fact that the surgery has made three errors to my prescription in the past year, one of which the pharmacy actually picked up and got back to them about! If I had to use a central warehouse, they no doubt wouldn’t pick up on errors and I’m sure it would take longer to sort out the issues when they do occur.
Tags: blood test, GP, GP surgery, injection, methotrexate, MTX, nurse, RA, rhematoid arthritis, rheumatology, sickness, surgery
At the behest of the hospital rheumy nurse, I’ve just been down to the surgery to have a blood test, since as I’m hopefully now getting more methotrexate into my system with the injections, they need to make sure that I’m not overdosing.
I got to the surgery, I went over to where the board hangs up where you collect your number and wait to be called for a blood test – no board. I headed back to the reception queue – the MASSIVE reception queue, the slow reception queue – in fact it wasn’t slow, it was immobile.
It took me 20 minutes to get to the front of the queue to say, ‘Where are the blood tests?’ only to be met by a blank look and, ‘Isn’t there a board …’
‘No, that’s why I’ve been standing in this queue for the last twenty minutes.’
‘Oh … well one young lady went home sick so perhaps they’re not doing them.’
‘It would have been helpful to put a notice up to save me queuing, and probably halve your queue at the same time!’
‘Oh, isn’t there a notice up? I’ll talk to someone about that right now.’
‘Don’t bother – they finish at 11 anyway and it’s 11 now.’
At least I needed to go anyway to get a printout of my new repeat prescription with the Metoject pen and then put that in to be reviewed by a doctor.
I sympathise with the sick phlebotomist; I sympathise with the rushed off their feet reception staff; where I draw the line is attempting to sympathise with blatant incompetence. How much effort would it have been for one of the receptionists (perhaps while she was getting coffee, as one of them did while I was queuing) to write a quick note saying, ‘No blood tests today due to staff sickness. Please try tomorrow but ring first.’ Not long I suggest. It also wouldn’t take long to inform all the receptionists (all three of them) that there are no blood tests, and yet clearly that hadn’t been done either.
It’s a good job I wasn’t going for a blood pressure check as my blood is boiling – at least it’s keeping me warm on a cold day!
Oops – well I’ve got myself a great big bruise this time, but not sure what I did wrong … other than probably rushing it and not sitting down and properly reading through the booklet to make sure that I’d absorbed everything thoroughly and knew exactly what to do.
It didn’t sting nearly as much this time, probably because I didn’t stand up right after doing it, but it bled a bit and bruised mightily. Perhaps I was just unlucky in where I put it, or maybe I didn’t press down hard enough before and/or after. Oh well … hopefully I’ll do better next week, and will read the book a bit more carefully too!
Well, it’s done! Of course it’s not done, ’cause i have to keep doing it for as long as it works, but the first one is over with … and it wasn’t bad at all! Hurrah.
I got to the hospital nice and early because parking is hell. It took me ten minutes to find a space in the car park, but it’s been much worse on other occasions so I’d left loads of time and had time fora pre-appointment coffee. That meant I was as relaxed as possible when I got in.
I was called into the first bit (weighing etc.) almost immediately and then waited only ten minutes over my appointment time to see the nurse, which was really good … and it wasn’t the old battle-axe either; it was the very nice nurse I’d spoken to on the phone, and she was very nice in person too.
She went through the yards of explanatory leaflets etc. very patiently and then we got down to business. I’d hoped I’d be allowed to do the deed in my thigh but knew that they might say tummy was better … and what they say goes! Fortunately what she actually said was, ‘We advise you to rotate the four possible sites – left leg, right leg, left side of tummy, right side of tummy, but if you don’t fell comfortable doing it in the stomach just swap between legs, and vice-versa’. I haven’t decided whether I’ll do it in the stomach yet – it’s still quite unappealing – but at the appointment I injected into my leg.
The nurse carefully explained about how to hold the injecting pen, which bit to press and when and ‘Don’t take it off your leg as soon as you’ve pressed it or there’ll be an almighty mess!’ So I did as I was told, pressed the big, shiny, yellow button and counted to five and then took it off … and didn’t feel a thing! Wow!
‘I didn’t feel a thing,’ I said, in surprise … shortly followed by, ‘Ow … I do now!’ It was quite stingy and painful a few seconds after the injection, but I just had time to think, ‘Oh no, don’t tell me I’m going to have an allergic reaction or something,’ before the pain passed, never to be felt again!
I’ve had no side effects, unless you count a TINY bruise, and definitely no stomach problems this week, so I’m pretty happy at the moment. Perhaps next week I’ll try the stomach … but at least I know that if I hate doing that I can just do the legs.