The trick for today…

January 16, 2020 at 10:07 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 4 Comments
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I’m feeling so much better today that the trick for today is going to be carrying on with all the sensible things I was doing yesterday and not just going, ‘Oh, it’s OK now, I don’t need to bother to rest the leg!’

One thing I didn’t add yesterday, although it was implied with Hottie, was that I’m not just ‘icing’ the leg, I’m alternating heat and ice, as suggested during my last big flare by my friend Carla of the excellent Carla’s Corner blog. At the time I said, ‘Nah, can’t cope with heat – it’s hot enough already’ but this time it’s not that hot or swollen, just painful and still, and alternating heat and ice definitely seems to help.

So today I must keep resting it, keep heating it, keep icing it, do a bit of gentle exercise (including a little walk to the doctor for the new study!) and NOT get carried away with my latest craft project and decide to do that later INSTEAD of resting the leg. 🙂 I nearly did that last night but the 1 minute 20 seconds waiting for the Hottie to reheat and standing up convinced me that that was a bad idea.

Doing something radical!

January 15, 2020 at 4:47 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 4 Comments
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So, instead of waiting until my knee flare goes from flarette to full-blown bad-ass flare, while doing absolutely nothing about it, and then saying, ‘Oh gosh, I should really read my old blog posts, I always forget there are things I can do’, I decided not to be the same ol’ numpty this time, and to actually do something radical and read through my blog post about what I should do in a flare, and then go and do it!

So OK, I’ve still been a bit of a numpty. Here’s what the previous blog post tells me to do:

  • Taking paracetamol – 2 every 6 hours including at night
  • Ice packs
  • Rubbing in 2.32% diclofenac gel
  • Resting leg horizontally as much as possible
  • Small bending exercises – not sure if wise or not but I’m hoping it reduces stiffness

Here’s what I’ve done from Sunday, when it started, until this morning, Wednesday.

  • Taking paracetamol – 2 every 6 hours including at night

That’s all folks! <Sigh>

And actually I do that all the time, flare or no flare, year round!

So this morning I got out the ice pack, and I’ve been alternating it with my super ‘Penguin Hottie’ that I got from my brother and SIL for Christmas. Here she is, looking rather fed up (the Hottie, not my sister-in-law) – but still hotter than I ever do! 🙂

Hottie

I have also been resting the leg, even while working – a fun arrangement involving the leg perched on a pillow on top of my computer tower – and doing the bending exercises. I had completely forgotten about the gel but will now go and put some on!

Anyway, the good news is that my leg is feeling somewhat better now than it did this time yesterday,  so I really hope I’m kicking it into shape – no pun intended!

Another day, another study

January 14, 2020 at 3:59 pm | Posted in rheumatoid arthritis (RA) | 4 Comments

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!)

Cloudy study

December 17, 2019 at 5:40 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Anyone remember the ‘Cloudy with a Chance of Pain’ study that I participated in some time ago? I also talked about it here. Well that was all the way back in 2016 but they had a huge amount of data to wade through, so the results only came out a couple of months ago. They had to have a huge amount of data because a) they were working with all sorts of different patient groups and b) the effects they were looking for were so slight, that to effectively statistically ‘see’ them, they needed lots of people. The point of the study was to see if patient-reported symptom worsening in poor weather had any basis in truth, and they investigated patient-reported symptoms (so open to some abuse but with so many people participating, probably not significant) as compared with the weather and the pressure in that patient’s vicinity each day for six months.

My personal data didn’t show any clear correlation between weather and symptoms, which quite surprised me, but overall the study showed that pain is more likely on humid, windy days with low pressure. You can find the results in more detail here if you’d like to take a look. Most of the patients had arthritis of one kind or another, and the most important factor turned out to be humidity. This probably won’t be a great surprise to many of you with arthritis!

The study was led by Professor Will Dixon, Centre for Epidemiology Versus Arthritis at the University of Manchester, and he suggested that one future outcome could be a ‘pain forecast’ to help us to plan our activities based on forecast pain, related of course to forecast weather.

A nice idea, but given that our meteorological office in the UK can’t seem to forecast more than about twenty minutes ahead of time, I don’t see it being terribly useful any time soon! Also, since they worked out that if your chances of pain were 5 in 100 on an average day, they would increase to 6 in 100 on a humid, windy, low pressure day, I’m not sure how significant this ‘pain forecast’ would be to an individual. Nevertheless, it could be useful in the future, and in the meantime the finding is interesting in itself – one of those things that patients have been saying almost for ever and most doctors have dismissed as nonsense or mood related. (The study also tracked mood, and even when accounting for mood, the weather-pain correlation remained.)

So, an interesting result, and I’m sure it will lead to more interesting results in the future.

Antibiotics and RA

December 12, 2019 at 6:50 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis (RA) | 12 Comments
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I’ve often wondered if my use of a LOT of antibiotics round about 2001-2003 might have had anything to do with the onset of my RA – diagnosed in 2007/08 but almost certainly having been around for rather longer than that. During that period I was living on The Fens, a very flat agricultural area with lots of crops and few trees, and something was literally getting up my nose – I was having almost constant sinus infections – no sooner had one finished then I’d go down with another one. As I mentioned in my last post, I now discover this might relate to low Immunoglobulin A… but it might not!

Due to the constant sinus infections, I was taking constant antibiotics, and there have been murmurings around for a while that there could be a link between antibiotics and RA.

Well I’ve just received the latest magazine from NRAS, and in it there is a short but interesting article stating that a study at Keele University has found links between antibiotics and RA onset. However, the study couldn’t say for sure if it was the antibiotics or the infections that might be triggering the onset of RA, but notably upper respiratory tract infections treated with antibiotics increased the risk of developing RA – while patients who had such infections and didn’t take antibiotics were not apparently at increased risk of developing the disease – which seems to point to the antibiotics rather than the infection being the issue.

Other studies looking at other types of arthritis have apparently found similar links.

However, please don’t see this as a reason not to take antibiotics – they can still save your life! In fact I’m taking some now – even though my life is not in danger – as I have another tooth problem! Of course, I have the disease already so I’m not at risk of developing it!

Low Immunoglobulin A

December 11, 2019 at 2:49 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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So, after trying gluten free a while back after a number of people said it helped their arthritis symptoms, my personal findings were it did nothing, nada, zilch, zero, not a darned thing for my RA symptoms, such as they are – BUT I had a whole lot less stomach upsets than I used to. So I kept it up for a bit … and then I thought maybe I’m actually Coeliac – i.e. genuinely have an autoimmune response to gluten. Autoimmune diseases quite often cluster, and although it used to be thought that all coeliacs were under-weight (which sadly I’m not even close to) it is now realised that many are not only not under-weight but are overweight or obese. I didn’t think I’d get taken too seriously at the overworked and overstretched surgery so I got a blood test done privately with a postal thing – they send you a kit, you take the blood and send it back, they run it through labs and a nurse calls you to talk through the results.

Well, I was quite impressed with the service, although I had to get a second kit (for free) because the bloods were haemolysed the first time – i.e. the red blood cells had ruptured. It’s quite a common occurrence and they were happy to send another test.

So what was the result – well unfortunately after all that, it’s inconclusive, because the tests are based on having high numbers of particular types of an antibody called Immunoglobulin A – but it turns out I have abnormally LOW levels of immunoglobulin A, which means that the tests they use to determine Coeliac disease are not relevant to me! So, I might or I might not!

However, in order to take the test, you have to have consumed gluten in at least two meals a day for six weeks to make sure that if you do have the disease, the markers are present. Now for the first three weeks or so my stomach was pretty miserable doing this, but for the last two it settled down and I’ve not really had much in the way of symptoms, as long as I keep the intake moderate – so that’s what I’m doing. Not gluten free but definitely not stuffing bread and similar all the time. We’ll see how it goes.

But what about the low immunoglobulin A, I hear you cry. Is this relevant in any way to your RA? And does it have any other effects? Well, yes and yes. It is apparently often low anyway in people with autoimmune diseases, but it can also be lowered by use of methotrexate, so it may have always been low with me or it may be a symptom of the many years of methotrexate use. However, it is an antibody that affects the mucous membranes – and such membranes occur in the lungs, the nasal passage and of course the gut. Well prior to my RA diagnosis I had a couple of years of almost constant sinus troubles – antibiotic after antibiotic and it wouldn’t clear. Eventually I had an operation to clear the sinuses but the problems persisted. Over the years they’ve mostly cleared up – but it could have been caused by this lack of Immunoglobulin A – and my stomach problems could also be related to that, rather than to gluten at all.

So where do I go from here? No idea! There is another test using a different antibody for Coeliac but I don’t even know if it’s available on the NHS even if the surgery were going to consider doing it. And I’m probably not Coeliac anyway. I’m not sure if I should alert my GP to the immunoglobulin thing – probably not! I imagine shoulders would be shrugged and that would be that – but it’s an interesting thing to know and speculate about! Perhaps one day some definite link between that and RA will be found – perhaps not. Meanwhile I’m kind of back to square one!

There’s more to life than biologics!

December 6, 2019 at 10:36 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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NRAS ran a very interesting webinar this week, ‘What’s new in rheumatoid arthritis?’ by Prof. Peter Taylor, University of Oxford. It is available to watch here: https://www.nras.org.uk/webinar-recordings-2018 and it was fascinating. (You need to put in your name and email, but then you get straight through to the webinar.) He walked us through the various different inflammatory pathways that can cause RA symptoms and then the various different ways of blocking those pathways, using both biologics and ‘small molecules’. For those not in the know, biologics are a group of drugs that hit the market about ten years ago and have made a fantastic difference to many RA patients’ symptoms and lives. There are now quite a few around so if one doesn’t work for you, another one might. And more are still being developed, that attack different pathways or different bits of the same pathways. But of course they don’t work for everyone.

The way biologics block the inflammatory pathway is by sitting outside the cells that send the messages that cause an inflammatory response, and blocking the inflammatory pathway from outside those cells. These molecules are obviously tiny in the normal scale of things – they’re molecules after all, but they’re HUGE compared to say an aspirin molecule, so they can’t actually enter the cells and interact with the pathway from within. This isn’t a good or a bad thing – it’s just two different ways of achieving the same goal – blocking the inflammation.

But for those really struggling to find a biologic that they respond to, there are a raft of new small molecule drugs being developed at the moment, and one or two have even hit the market. One of these is Baricitinib, and it’s showing very good results in general and notably very good results for those who haven’t responded well to a biologic. Of course one thing I don’t know about is price, but I do know that small molecule drugs are generally cheaper to produce than biologics, because biologics have to be brewed up inside bacterial cells and then harvested whereas small molecule drugs are not produced through a living system, but ‘just’ chemically. Of course, new drugs are always expensive – drug companies have spent millions of pounds researching them and putting them through clinical trials, and they want their money back and then some. But chances are the price of Baritcitinib, if it’s high now, which I don’t know, will come down fast as soon as it’s out of it’s patent.

In the meantime, NASTY (aka NICE, the National Institute for Health and Care Excellence in the UK, which is not so much about excellence as about saving money) have actually approved this drug for use in patients who’ve ‘failed’ on methotrexate and a biologic, if I remember rightly… so chances are it’s not that expensive!

There are also a bunch more small molecule and biologic drugs being developed, and the aim is not just to find more drugs for people who ‘fail’ on the ones available, but to get better overall results for all patients – for example we all know that pain doesn’t necessarily correlate perfectly with inflammation, so we don’t just want drugs that reduce inflammation if they aren’t helping with the pain – and that’s being investigated too.

So if there’s any such thing as a good time to have RA, this is probably it, folks!

Addition: I understand from my American friends that sadly these small molecule drugs are also exceedingly expensive in the US and not covered by some plans – this is a sad indictment on the US system and the way our NHS is probably now inevitably heading too, but thankfully for now these drugs are available on the NHS – once you’ve ‘failed’ other things.

Pharmacy frustrations

December 3, 2019 at 11:26 am | Posted in rheumatoid arthritis (RA) | 4 Comments

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

November 18, 2019 at 2:41 pm | Posted in rheumatoid arthritis (RA) | 8 Comments

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

October 4, 2019 at 12:19 pm | Posted in rheumatoid arthritis (RA) | Leave a comment

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!

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