Pollyanna Penguin’s RA Blog

Another day, another study

I’ve lost count of the number of studies I’ve participated in since I was diagnosed. I did one recently but I’m currently sworn to secrecy (kinda) so can’t tell you about it! And on Thursday I shall be taking part in another one that has nothing to do with RA – it’s a much more general study and is looking at genetic factors in disease. The cool part of this one is that you know those hideously inaccurate ‘Find out if you’re part Viking’ pay £200 to get your DNA analysed things they’re always advertising? Well with this study I get my personal DNA analysis done without paying, without spurious comments like ‘50% of people with your genes are red-headed so you might be too’ – I think I know what my hair colour is … but with any interesting info such as whether I have any genetic markers that might suggest diseases such as RA, or other things. You have the option to take part and NOT find out about your genetic profile, and I can quite understand why people would do that, but I’ll be fascinated to find out what I can about mine.

The one I did today though wasn’t quite so ‘cool’. Things from here on are going to get a bit … graphic, yucky, frankly shitty, so if you’re having dinner, come back some other time. 🙂

The study I took part in today was IMRABIOME study from King’s College London. The main project is about RA and gut microbiota. I’ve posted about this once before in passing, all the way back in 2014, but it’s becoming a bigger and bigger topic as time goes on. So basically, as you probably, the gut is full of ‘good bacteria’ that help us to digest stuff and do all sorts of other lovely things, as well as, sometimes, some not so good ones. Certain things, like too many antibiotics, can destroy the good bacteria, or alter the balance of bacteria which effectively alters our digestion and has other issues too.

RA, as most of us know, is often treated with DMARDs, including methotrexate, and the IMRABIOME study is looking at the influence of methotrexate on the gut microbiota. This larger study, which I’m a side part of, is looking at people who’ve not yet started on DMARDS, so that they collect a baseline faecal sample, and then take another faecal sample some months down the line when the treatment has been going for a while. The main study also collects many other samples including urine, blood and saliva, and looks at changes in the microbiota after DMARDs.

Unfortunately the study was hampered with the usual problems – I can tell you from first hand experience that taking a bowel sample is not a lot of fun and about 17% of patients who did the first part of the study then decided not to carry on with it – according to the article about the study in the NRAS magazine Winter 2019.

Consequently to boost the data a bit they set up a side study within the big NOAR study I’m part of, for people who’ve been on DMARDs a while to provide just one faecal sample and one saliva sample, to check the current state of their microbiota. I suspect mine are a complete mess, for various reasons, but sadly I will NOT be getting my personal data back on this one. It’s all anonymised etc. etc.

Research suggests that methotrexate is metabolised by some gut bacteria and MTX is also an antibacterial agent, potentially causing further problems, and that’s one of the things the study is looking into.

Well, I always jump into any study I’m offered with both feet shouting ‘how high?’ and this was no exception. But my goodness the procedure was a bit tiresome.

Actually collecting the sample would have been fine except that I had a nasty stomach upset yesterday and I had to do it Monday-Wednesday so that it would get to them before the weekend, so I did it today but was still feeling pretty poorly. The instructions were quite long-winded and in about three different places. There’s a poo-catching contraption that you have to stick into the loo (I warned you!) that has one set of instructions, then there’s a separate set of instructions for actually taking the sample, sealing the tube, putting extra seals on, putting the tube in the box, hydrating the ice-pack, freezing the ice-pack and then putting the ice-pack in the box,  and sealing the box, once it also contains the saliva sample. There’s separate instructions for taking the saliva sample too of course. Then there’s the big warning; DO NOT CLOSE THE BOX UNTIL YOU’RE FINISHED as you can’t open it again! Then there’s further instructions about how to stick the mail labels on – and NO, it was NOT obvious!! 😉

So, I did all that stuff,  or so I thought, sealed the box irrevocably and then realised that I’d left the bloomin’ ice pack hydrating in the sink. In other words, sealed box, no ice pack. Instant panic!

Fortunately there was a contact telephone number and amazingly, someone actually there on the other end of the phone. The lovely lady was very reassuring and said the ice pack only mattered really in the summer, and that as long as the samples were in the box I should just go ahead and post it, as in this weather it should be fine – so I did.

There’s a slightly amusing happy ending to this story … I’m having one of my annoying mini-flares at the moment –  it started with aches everywhere but now has settled into my left knee as usual … and guess what? The incy-wincy ice pack that should have gone into the box is a very handy size to tuck down my trousers and rest on the knee while I work. (I did think of calling this post ‘Is that an ice pack in your trousers or are you just pleased to see me?’ but I managed to restrain myself … just. I’m afraid feeling unwell makes me even more puerile as well as more dopey and fatigued!)

Pharmacy frustrations

OK, it’s a pretty minor irritation because luckily I have some ‘spare’ methotrexate pens due to not taking it for a couple of weeks some months ago when I was on antibiotics, but it’s just one more frustration on top of a huge pile of others in my life right now – I’m feeling rather low anyway, because so many friends are really unwell, and there have also been two deaths recently and one couple who we all thought would be ‘together forever’ splitting up. On top of that I’m on antibiotics for yet another tooth abscess, and we might have rats or squirrels in the attic! Oh joy!

And then yesterday I picked up my monthly prescription as usual, got it home and found they hadn’t issued the methotrexate!

I phoned the pharmacy and asked if they’d just not given me an extra bag with it in or something – they said no, they hadn’t received the prescription. They ‘explained’ that they receive all the other medication I need as an online request, but for some reason methotrexate has to come over as a paper prescription – god alone knows why!! And somehow the paper prescription, no doubt for some bizarre reason considered ‘safer’ hadn’t been received.

So I phoned the surgery and had, initially, one of those stupid, pointless conversations with the secretary. ‘It says on your record that we can’t reissue it until the 21st of December.’ ‘Yes, I know – that’s because you apparently issued it on the 29th November, but, as I just explained, I haven’t received it.’ ‘Oh yes, we issued it on the 29th November.’ ‘Yes, I know – but I haven’t received it and the pharmacy say they haven’t received it from you.’ Finally at this point she started to take me more seriously – I had a strong vibe of ‘bloody patients, what do they know?’ initially, but once she grasped what I was actually saying she was much more helpful, and eventually very apologetic.

What it boiled down to was that they don’t know what’s happened – they printed it on the 29th, it isn’t in their giant pile of prescriptions waiting to go over to the pharmacy, and the pharmacy hasn’t got it. It’s vanished into thin air. So – really safe, these paper prescriptions, aren’t they? Thank heavens they don’t do them online. (Luckily I managed to stay calm and nice and keep my sarcasm to myself on the phone … for a change!)

Also luckily, as I mentioned, I had some ‘spare’ methotrexate. Had I not had spare, I would have missed out on my dose last night and I doubt I’ll receive ‘this months’ until the end of this week at the earliest as they have to order it specially, so I’d have missed a week. It’s just another upset I really didn’t need!

Sixth month hospital check

So once again I left 40 mins for the drive in (which is a little long but allows for getting stuck behind something slow, which happens all to often on the road into the city!) and about 20 mins or so to find a parking space – and once again I needn’t have bothered – I sailed in in 30 minutes and found a parking space within 5! So i was half an hour early and treated myself to a nice coffee.

I had also anticipated, as this has happened frequently on my winter check-up, a massive waiting time – maybe an hour or two sitting in the waiting room before I was seen. Nope – I think the doc this time was running all of about five minutes late, if that ,and she was delightful!

I had nothing to report really – since my really awful flare in May I’ve been fine – hurrah! I checked a couple of minor points with her – and one major point. When I got the results of my knee aspiration there was ‘nothing’ i.e. no positive results in the aspirated fluid. I was confused – did that mean it wasn’t an RA flare after all? EVERYTHING pointed it to be being an RA flare, including the intense swelling and redness, the high(ish) temperature I’d had and the general malaise, and the extreme pain – and they were apparently saying nope, not a flare after all.

Turns out of course that’s NOT what they were saying – which is why it’s always so important to ask about these things! Just because there was nothing to worry about in the aspirated fluid didn’t make it something other than RA – it just means that it was an RA flare without any added complications.

Sounds completely ridiculous to say I was glad it was considered as RA – after all no one wants a flare, right? But for me, I’ve been diagnosed for 11 years and for most of that time I’ve been fine. This has lead to healthcare professionals of various types – everyone from nurses through GPs to my consultant – wondering if it is RA after all, and honestly, having been diagnosed and having got a treatment that works most of the time, I don’t want that treatment or bizarrely that ‘identity’ taken away from me. So having gone through the hell of an honest to goodness full-blown, causing me to be bed-ridden RA-flare, my first and hopefully my last, I at least wanted to get something from it – and that was, ‘Oh yep – definitely RA this time!’

I know my friend Carla will understand as she was having this conversation about ‘identity’ over on her blog here. It really resonated with me! It seems dumb to ‘want’ RA – and believe me, neither of us do – but having gone through a time without a diagnosis, and then got the diagnosis, gone through a kind of grieving process in accepting the diagnosis, come to terms with it and learnt all we can about living with this dratted disease, it’s no fun when someone comes and pulls the rug from under you and says, ‘Nope, let’s start again!’

So anyhoo – that’s not what’s happened – PHEW! Back to the ‘joys’ of living with RA, but thankfully at the moment it’s really not bothering me very much at all. Long may that continue!

Advice

For the 5th day of the 5th RD Blog Week the prompt is Advice – What advice would you give to your newly diagnosed self after what you’ve learned living with RD?

Well, I’m taking the lazy option and I’m going to link to a post from the blog week two years ago where advice was a wildcard and I used it. I could have just posted my link directly to that post, which is here, but since it’s all labelled up with ‘Day 3 of 2nd annual blog week’ or words to that effect, I thought I’d better pop in this explanatory post so that it’s clear it’s for the FIFTH blog week too! I think and hope the advice is still useful!