Survey about COVID-19 and Plaquenel

March 20, 2020 at 4:34 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , , , , , , ,

I’ve been contacted by a scientist at the University of Ferrara who is looking into whether Plaquenil, also known as Aralan, chloroquine or hydroxychlroquine, can help with COVID-19/coronovirus. Please re-post, write your own version or whatever, if you blog, to get as many people filling this is as we can!

Please take the survey here, even if you don’t take Plaquenil, and whether or not you’ve had the virus. I’m guessing that it might be worth taking the survey again if you haven’t had the virus and then do get it – but I’m not sure. Stefano, if you read this, please let me know and I’ll edit accordingly!

Here is what Stefano says:

This is a SurveyMonkeys link: https://www.surveymonkey.com/r/RHLVY6W

Help the world to fight Coronavirus!
Do you use Plaquenil, Aralan or chloroquine?

A common drug, called Plaquenil, has been shown by scientists to block the coronavirus in test tubes.

Many people worldwide use this drug, or its generic Hydroxychloroquine (HCQ), to treat lupus erythematosus or rheumatoid arthritis.

Other people use a similar drug (Aralen), chloroquine, for malaria or Amebiasis.

I work at the University of Ferrara (Italy). Like many other nations in the world we are now hit hard by coronavirus. The hospitals are more and more stressed by the ever increasing number of patients. The pandemic is now expanding worldwide. Large scale studies for the efficacy of this drug against coronavirus are not yet available.

Even if you are not using any of these drugs, you can be part of the solution!
Simply answer 3 questions and help to stop this deadly disease called COVID-19!

Many thanks!

There’s a thin line …

March 20, 2020 at 10:01 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , ,

There’s a thin line between bravery and stupidity and those of us who are saying they’re just going to ignore advice to self-isolate or socially distance and get on with their lives may be surprised to know that they’ve crossed it to the wrong side!

COVID-19 is a pretty low risk disease to the vast majority of individuals, leading to mild to severe flu-like illness which can be easily coped with at home, but it is extremely contagious and it’s believed to be contagious for around five days BEFORE you have any symptoms. And for the unlucky few who are elderly and/or have that famous phrase, ‘underlying health conditions’ and for the even more unlucky who go into hospital for some other reason and pick up the virus there, it’s very, very dangerous.

So those who feel fine and think they can ‘just get on with their lives’ are potentially putting many, many other people at serious risk by doing so.

On top of that our NHS is broken. There’s not a country in the world that can really cope well with an exponential rise in cases leading inevitably to an exponential rise in serious cases, and frankly the way the NHS has been run down over the years means that we’re a very, very long way from being able to cope.

There’s a good article here https://www.bbc.co.uk/news/health-51915302 that explains about ‘mitigation’, the attempt to slow the spread (because we can’t stop it) of the COVID-19 virus to allow the NHS to put some coping measures in place.

If you want to be brave and mildly reckless, stop panic buying and start volunteering to help the vulnerable in your community – unless, like me, you are one of the vulnerable, in which case do the NHS a favour and sit tight at home. This too shall pass! There are many groups springing up to help, to mitigate the many morons out there panic buying and being completely selfish and charging £5 for a loo roll on Facebook. I mean seriously – we can all actually live without loo roll – and I won’t gross you out or insult your intelligence by suggesting ways to do so!

Coping strategies

Self-isolating, and even social distancing, can have significant effects on mental health. Before this whole thing blew up, isolation in the elderly population was a serious problem here in the UK – and it still is. Here are a few things that I personally think can help – I’m sure there are many, many others!

  • Stay in touch with friends and family through SKYPE, Facetime, Facebook Messenger or anything else that is face-to-face rather than phone, text or email. I think that gives you more of a sense of contact.
  • Focus on doing things you enjoy – my mum’s just gone and and bought a big pile of puzzle books, and she also has many other hobbies to keep her busy, as do I. The more hobbies the better. If you don’t have hobbies (and I know some people don’t, although I find this hard to comprehend) watch things on YouTube, or educate yourself with lectures or do virtual tours of museums. Here’s just one of many lists of virtual museums to tour. Or how about helping with scientific research through Zooniverse or similar things.
  • Keep exercising – here in the UK as far as I understand it, the rather nebulous advice says it’s fine to go out and exercise – just keep 2 meters from other people. If you can’t/don’t want to walk, there are many online exercise routines. I use this warm-up on the NHS https://www.nhs.uk/video/pages/basic-warm-up.aspx and then play Wii table-tennis with jogging in between points.
  • Re-frame – yes, this is probably going to be an economic disaster, but it’s also an opportunity to educate yourself for free online, spend more time with your partner (which I realise for some could be more of a strain than a bonus!), chill out and relax. And hey, there won’t be much around to spend that money that isn’t coming in on, so provided we can pay our bills …

My heart goes out to everyone struggling to cope, and I do realise that those who are already suffering with mental health problems will not find these tips terribly useful, but for those who are just concerned about the future, perhaps they will help a bit!

Reframing

March 11, 2020 at 1:56 pm | Posted in Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , , , ,

While I’m not a hippy-dippy-penguin-chickie, I do firmly believe that a positive attitude is helpful and makes one feel better than not having a positive attitude! After all, it’s only common sense that if you go around feeling negative and responding negatively to things that happen all the time, you’re going to put yourself in a mentally downward spiral. While I don’t think going around with a big smile on your face all day is going to cure RA (or any other health condition), it can certainly make you feel better ‘in yourself’ in general, and that can’t be bad.

One technique I find handy is, I believe, known in the neuro-linguistic programming world as reframing – but don’t quote me on that because what I know about NLP can be written on the back of a postage stamp. But anyway, as I see it,  if something happens and it feels like a definite negative, you can choose to ‘reframe’ it in a more positive light – or in other words, find a different angle to look at it from.

Today provided a prime example. I now work from home, which I absolutely love. I’ve done that for a bit over a year now and it suits me down to the ground. I was working away happily when suddenly BAM, I wasn’t – the lights went out, the screen went blank, the ‘uninterruptible power supply’ got interrupted and started its annoying howling beeps – while completely failing to protect my PC … and altogether things looked pretty bleak, especially as we’re busy at work right now.

And then I thought hey, it’s not the end of the world – in fact it’s a great opportunity to do some crafting, given that what I had ready to do was completely no-tech – fabric and paper marbling. I had just made a coffee, so no worries there, and thanks to the joys of modern technology I was able to text hubby and say ‘We’ve got a power-cut’ and was able to get his response, because the power company had emailed him to let him know there was a problem – so I knew I didn’t have to sit trying to contact them. And of course 4G was still working so I could even get on line and find out more info myself. It said it would probably be an hour or two … so out came the crafts!

And to cap it all, a technique I’d been working on and failing on for the last two days suddenly came together and worked perfectly! So all in all, it was definitely making lemonade from those lemons life was throwing at me!

Of course I’m an hour behind in my work and need to buy a new uninterruptible power supply, but at least I enjoyed the metaphorical lemonade!

Irritation cometh before a fall?

March 4, 2020 at 3:03 pm | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
Tags: , , , , , ,

Perhaps it was karma, super-fast delivery thereof? I was waiting to go into the bank this morning and an elderly couple were coming down the steps, and taking up the full width so I couldn’t get in. Of course I waited, but they were chatting and stopping to examine the handrail (which looked absolutely fine to me) and not noticing me waiting to get in and I was getting rather irritated, so when they did finally clear the way I stepped firmly forward and …

Next thing I knew i was lying on my left side, my left hip having very firmly impacted the edge of one of the steps, feeling rather shocked and winded. My first concern? ‘Oh no, the money I’m about to pay in has all fallen out of the book and the book’s fallen apart’, followed shorty thereafter by ‘OUCH!’ Followed by, ‘Oh yeah, typical, those two haven’t even turned round to see if I’m OK.’ At which point the couple who I had been irritated with turned around, dashed back, checked if I was OK, helped me up, dusted me off, made sure again that I was OK and suggested, when I assured them I was, that I had a sit down in the bank before doing my paying in. They were very sweet and didn’t really want to leave me but I reassured them I was fine.

I did my paying in all the hip was pretty painful – I was confident it was just a bruise, and so it has turned out to be – and then was determined to go for a walk as planned, so I did – and on the way I met the couple again, who anxiously checked that I really was alright!

So of course now I feel very guilty for my irritation  – I must learn some patience! (I must also find that sachet of Arnica!)

I have no idea why I fell – I think it was just ‘one of those things’ but it’s always an extra worry with RA! Did my knee maybe give way? I have no idea. I have no recollection of anything between stepping forward and landing. (And no, I’m not suggesting I blacked out or anything, just one minute I was walking and the next I wasn’t!) I think most likely i I just misstepped as anyone might. I took a look at the steps when I came out of the bank and there was nothing wrong with them. I told hubby and he jokingly said ‘Sue them!’ So I said perhaps I’d sue him instead since it was his money I was there to pay in!

I did feel really shaken up for a good couple of hours after the fall. I suppose that’s part of getting older. It wasn’t that long ago though that I fell by slipping on our garden path (although again I don’t remember actually slipping on anything, just BAM, landed on the path!) But I didn’t feel nearly so shaken by that. Mind you, I didn’t have a sharp edge impacting my hip that time!

Anyhoo, that’s two unexplained falls in four months which bothers me a little bit. I expect hubby will say I’m just being dopey and not looking where I’m going – and he’d probably be right! At least I got away lightly with a mere bruise – although it’s a mighty one! One of the few advantages of being well padded!

A little fed up!

February 14, 2020 at 12:31 pm | Posted in antibiotics, Me | 4 Comments
Tags: , , , , , , , , ,

I’m on the antibiotics again! It feels as though since before Christmas I’ve either been on antibiotics for something or been having a flare! I reckon since November I’ve had two or three healthy days a month! It’s nothing major (follow the asterisk if you’re not easily grossed out)*, but nonetheless it’s more antibiotics, which is not good – well OK, it’s good for clearing up the problem, but not good in general and not good for the ‘good bacteria’ in the gut, aka microbiota. It also has side effects.

I’ve probably written a lot, and i certainly squawk a lot about how you can’t assume that you WILL have the side effects in any given drug. Even the ‘very common’ ones are usually 10% or so of the people that take it, and yet many people look at the list and immediately say ‘Oooh, I’m not taking that, I don’t want headaches, dizziness, the runs, feeling faint, double vision …’ or whatever. NO – IT DOESN’T WORK LIKE THAT! You probably won’t get ANY of those things, and the chance of getting all of them is minuscule and possibly nonexistent!

However, it does seem that if there’s a stomach-related issue with antibiotics, I’m gonna get it – and sure enough, the ONLY common side effect of these particular drugs is stomach upsets, and yep, I have one!

I’ve also been going through a migraine patch lately, which hasn’t made me feel any better!

So all in all, I’m not playing Pollyanna’s Glad Game too well right now! I KNOW that there are many, many people, indeed many reading this, who are in a much worse state than me, and while I have deep sympathy for them (maybe you), it ain’t making me feel any better!

On the bright side … the RA is currently quiescent … and I’ve got a friend coming round later to take me out for a birthday coffee … and maybe cake if the tum behaves, so not all bad! I also have a printing class coming up on Saturday AND Sunday and I’ve been to two before so I know the teacher’s great – the wonderful Amelia Bowman – I love her stuff and she’s a great teacher.

So lots to look forward to – and I had a lovely birthday on Sunday in spite of Storm Ciara ruining our original plans ; (I hope Storm Dennis isn’t anywhere near as bad or I won’t be getting to the printing class!) – so really I just need to stop being such a wuss!

 

 

 

* A HUGE and very much infected cyst under my arm, which, probably not coincidentally, suddenly flared up on Monday night, a few hours after I’d taken my methotrexate. The pharmacist who prescribed the antibiotics was ever so impressed by its size and depth. 😦 I think he’d have liked to have got all his medical friends round for a party to poke and prod it and generally admire it.

Knee update – on the mend

February 5, 2020 at 11:30 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , , ,

So it’s been about three weeks since the latest knee flare-ette started and I think ‘doing something radical’ actually did the trick – OK, it’s taken three weeks whereas if I go and squawk loudly enough at the doc it might mean I get steroids or an aspiration or whatever and it reduces it to maybe two if I’m lucky, but this time I managed to avoid the need for either steroids or an aspiration, just by being sensible, so I’m rather pleased with myself.

I can’t say I enjoyed the process – the minimal exercise has been very frustrating and probably helped to lead to the fairly drastic migraine last week and the cold/sinusitis I’m just getting it over. It feels as though every time I build myself up to doing at least a couple of miles a day walking and/or some messing around in front of the telly with the Wii, a flare comes along and sets me right back to square one. I don’t think that’s actually the case – it just FEELS that way! But today, in spite of some very minor twinges, hubby and I had a pleasant 1.5 mile pre-work walk in the sunshine, and I’ll get a fraction more exercise later trudging round the supermarket for the weekly  shop, so I feel I’m getting back on course.

Reading other people’s RA, arthritis and other health issue blogs really makes me realise how little I have to complain about in comparison – but hey, that’s never stopped me complaining! ‘-) But right now, no complaints as I do think I’ve come out of the flare-ette and should hopefully be on the mend.

Access to biologics in the UK

January 24, 2020 at 2:40 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , ,

The NHS consists (partially) of area-based (geographical area that is) Clinical Commissioning Groups (CCGs), who can decide to some extent whether patients are given particular treatments, and exactly what those treatments are. They are basically the budget holders for the geographical area… as I understand it, and my understanding is not great here i confess.

NRAS has been hearing that some CCGs are restricting access to biologics on the basis that a patient has tried two or three already and they either haven’t worked or have stopped working. Due to this they put out a Freedom of Information request to CCGs and asked NHS England to investigate, because NICE guidelines clearly state that as long as drugs are clinically appropriate, and approved by NICE, patients should have access to them.

NRAS announced yesterday that the NHS has issued a ‘clear statement’ as follows, from the Regional Medicines Optimisation Committee:

‘A policy adopted by a commissioner that would serve to limit patients’ access to appropriate treatments based on a number of prior treatments being attempted would be counter to the provision so of the NHS Constitution.

The NHS Constitution pledges that patients have the right to drugs and treatments that have been recommended by NICE subject to being clinically appropriate, and patients have the right to expect local decisions on the funding of drugs and treatments to be made rationally and following the proper consideration of evidence.

Clinical assessment of the appropriateness of treatments should be the overriding factor rather than the implementation of policies for cost saving reasons.’

The full statement can be found here: RMOC Advisory Statement.

I’m not 100% sure how clear this statement is given that on the full statement it still has the words, ‘Prescribing choices should be made on grounds of clinical and cost-effectiveness…’ which perhaps leaves open to interpretation whether it’s cost effective or not to try a fourth, fifth or sixth biologic. However, overall this is GOOD NEWS for patients, and the more of us in the UK that can spread the word, the better, because as patients we need to make sure that our care teams are aware of the change. They’re busy people and sometimes these things can slip past! So if you’re in the UK, please blog about this, Tweet about it or make sure your care team is aware of it!

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
Tags: , , , , , , , ,

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
Tags: , , , , , , , , , , ,

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!)

Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.