A bit of an update – I can’t believe it’s been so long!

October 15, 2014 at 1:35 pm | Posted in rheumatoid arthritis (RA), Me, arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 3 Comments
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I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.

It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!

And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!

I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!

And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.

If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:

  • A blood sucker (aka phlebotomist)
  • The lab doing the work on the cholesterol
  • The hospital secretary
  • The surgery secretary who sent out the letter
  • The GP who had to call me back and discuss what we’d discussed three weeks before

‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.

Hairspray?!

January 20, 2014 at 11:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff,  although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.

Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!

And then it went again.

I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.

OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!

OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.

Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!

Hip hip hooray!

August 13, 2013 at 8:45 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’

Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’

Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!

The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!

 

But what if …

May 17, 2013 at 8:47 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 13 Comments
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So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?

Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.

So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.

So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.

So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!

Well, back to crossing those flippers and hoping it never comes to that!

You? Arthritis? Aren’t you a bit young?

May 2, 2013 at 9:37 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 10 Comments
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You know, when I was first diagnosed with rheumatoid arthritis six years ago, when I was 39, comments like that used to really annoy me. I lost count of the number of people who said things like ‘Oh, aren’t you a bit young for that? My granny has that. She’s lost some weight lately though and feels so much better.’

‘Why do people have to make dumb comments like that?’ I’d wonder. So I’d try educating them – I’d patiently explain that what I had was rheumatoid arthritis, an autoimmune disease where my body has decided it’s a neat idea to attack its own joints, whereas what their granny had was probably osteoarthritis.

My favourite response to that was ‘Oh no – she had a big bowl of cereal every day and had really strong bones.’ So I then had to explain that osteoarthritis was ‘wear and tear’ arthritis, and what they were thinking of with the milk was osteoporosis, which is a reduction in bone density that can lead to fractures amongst other things, and which can (maybe … sometimes) be avoided by a good calcium intake.

Usually, with a few deep breaths and counts to ten, I would manage an explanation that convinced them that granny and I didn’t have the same thing – but it did used to drive me nuts.

Now, seven years on, I’m 45, overweight, look 50 on a bad day, and nobody says ‘Aren’t you too young for that?’ any more.

I kind of miss it.

Niggles and Grumbles

February 13, 2013 at 10:02 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 6 Comments
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I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!

I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.

It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)

At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.

Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.

A new drug target identified for RA

January 31, 2013 at 10:12 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 1 Comment
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A protein called IRHOM2 has been identified as a possible new target for drugs aimed at treating RA, and could be useful for those who do not respond to anti-TNFs or even eventually replace anti-TNFs altogether. The full article on IRHOM2 can be found here, but here’s a short summary.

TNF or tumour necrosis factor has a useful purpose in the body; it is a signalling protein and it signals the body to produce a protective inflammatory response. Thus if a part of you is infected, TNF starts the process of inflammation, which takes immune response cells to the appropriate area in the blood, and they start to attack the disease-causers. In this case inflammation is a good thing.

However, when too much TNF is produced, immune cells start to act on things they shouldn’t, like our joints – leading to RA.

Anti-TNFs attack TNFs directly, and do a mighty fine job for many people, but they are toxic and can have nasty side effects.

IRHOM2 is a protein that helps to release TNF from where it sits harmlessly and inactively on the surface of cells, so attacking IRHOM2 should have the same effect as attacking TNF – reducing in TNF release and therefore reduction in inappropriately active immune cells, and so reduction in RA symptoms.

It is hoped that drugs targeting IRHOM2 would be less toxic, because they will only block TNF release from the specific cells that contribute to joint damage, and they could be an alternative for those who don’t respond well to anti-TNFs.

There is, of course, a long way to go. This is just the identification of a possible target. The next step is to find something that will actually block IRHOM2 and be safe to use in patients. Then there will be the long, slow plod (quite necessary for safety reasons!) through clinical trials, with no doubt a few failures along the way – but some years down the line this could be a real breakthrough. Let’s hope so!

 

p.s. I do hope this makes sense! I’m really, really tired and I haven’t had hubby proofread it yet!

Why are three-quarters of RA suffers women?

January 12, 2013 at 6:03 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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Well, all those of us who suffer from RA and/or are women will already know that it’s not because we’re a bunch of winging Minnies, but until recently, although a genetic link was suspected, it had not been found.

Professor Alan Silman, medical director of Arthritis Research UK, said: ‘This is the first time that a genetic association has been established between rheumatoid arthritis and the X chromosome. This could provide a useful clue in helping us to understand why rheumatoid arthritis is three times more likely to occur in women.’

It was reported late last year that among the 46(!) genes that seem to be linked to people getting RA, some have recently been discovered that are on the X chromosome. Now both men and women have X chromosomes, but while women have two X chromosomes, men have one X and one Y chromosome instead, and the genes don’t occur on the Y.

This is all part of a long-term study from the University of Manchester (UK) and the genes on the X chromosome are among the 14 found towards the end of last year.

Professor Jane Worthington, study lead based at the NIHR Manchester Musculoskeletal Biomedical Research Unit, said: ‘This groundbreaking study brought together scientists from around the world and involved the use of DNA samples from more than 27,000 patients with rheumatoid arthritis and healthy controls’ She added, ‘We observed remarkable similarities with genetic markers associated with other autoimmune diseases,’ which is an interesting, but perhaps unsurprising finding.

The intention behind all this work is that it will lead to new ‘genetic therapies’ – drugs that can target certain genes and switch them on/off as appropriate. Let’s hope they won’t be too long in coming!

Shoulder injection has worked … a bit …

November 7, 2012 at 9:32 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 3 Comments
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When I had that shoulder injection I was finding it very hard to pinpoint exactly where the pain was, but I know it was kind of ’round the back’. Well … the pain round the back has gone, the mobility is improved but not great, but now I can exactly pinpoint the pain that remains and it’s to the side/front! I still can’t lift the shoulder much above the horizontal.

I went to see my GP about it last week and she’s put me forward for a scan. I was rather hoping for another injection but she says it’s too soon as, since there has been some improvement from the one I had, it should still be working away and might start to improve the other bit too. I rather doubt that, but she’s the doc, so we shall see!

The other thing she said was that if they do the scan and can see the exact spot that is inflamed, they can do the injection there and then and be sure that it’s in just the right place. And being the NHS, by the time the scan comes through I will certainly have left enough time between injections!

So for the moment it’s a waiting game … again!

In the meantime I have my second cold of the winter, and it’s not even supposed to be winter yet. <sigh, achoooooooooooo=””> I’ve also had an unpleasant flare through most of September and the beginning of October, but that seems to be over now – phew. As usual, nothing whatsoever showed in the bloods. In fact, when I have my six-monthly rheumy appointment in December I’m expecting him to say ‘Oh, did you have a bit of a flare in July – your bloods are slightly up.’ I was 100% fine in July!

RA – it’s not ‘fair wear and tear’!

May 4, 2012 at 9:20 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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One of the many things people with rheumatoid arthritis battle with is the many misconceptions around the disease, the most ‘popular’ of which is that ‘arthritis is wear and tear on your joints’. One of the reasons this misconception is so hard to grapple with is that it’s true – sometimes. There are many, many kinds of arthritis – all arthritis means is joint inflammation. It comes from the Greek arthron (arthretes or similar depending on which dictionary you look in!) for joint, and –itis, a suffix used to indicate inflation, so it means inflamed joint.

What the word arthritis doesn’t tell you is why the joint is inflamed, and thereby hangs a tale! It gets even more confusing because arthritis tends to be split into the many kinds of ‘inflammatory arthritis’ on the one side, and osteoarthritis, which (is ‘wear and tear’ though by no means always fair!) on the joints, on the other. And yet arthritis means inflammatory, and of course osteoarthritis can cause some inflammation too, so it makes it even harder to explain the differences simply.

Perhaps the most important thing is that however unpleasant, debilitating and downright painful osteoarthritis is, it affects the joints and only the joints. Rheumatoid arthritis and the other related autoimmune diseases are just that – diseases, aka illnesses, and can affect considerably more than your joints.

The difference in a nutshell

Osteoarthritis (also known as wear-and-tear arthritis or degenerative joint disease) is caused by the cartilage between the bones in a joint wearing away or breaking down.  The cartilage basically sits between the bones of a joint and stop them rubbing together. When they do rub together because the cartilage is worn away it can cause a great deal of pain and debilitation.  It often (though by no means always) occurs in one joint, and may be a joint that has been used a great deal e.g. a blacksmith getting osteoarthritis in an arm joint.

Rheumatoid arthritis on the other hand (and that’s the one I’m going to talk about because it’s the one I know, as I live with it every day) is a chronic, progressive, inflammatory  arthritis. Chronic means long-term, it’s there and, in this case, it’s not going to go away. Progressive means without treatment it’s likely to get worse. It is an autoimmune disease, whereby, for reasons not yet understood (though theories abound) the body’s immune system attacks some of the body’s own tissue instead of (or as well as) invading bacteria etc.  In rheumatoid arthritis (RA) it is the synovium (joint lining) that is the main target of attack, but many other organs can be affected too.

Spot the difference

Even doctors find this one tricky, which is why RA can sometimes take a very long time to diagnose. Another problem is that RA seems to crop up with infinite variety; just about every patient ‘presents’ differently when they go to see their doctor. Some things to look out for though are:

RA will almost always occur in more than one joint at the same time

  • RA will often involve obvious swelling around the joints
  • RA will often involve obvious redness around the joints
  • People with RA will often find joints extremely stiff first thing in the morning, with this stiffness wearing away gradually over a period of an hour or more
  • People with RA will often feel unwell, with a kind of general ‘don’t feel good’ feeling including tiredness, headaches, lethargy and fatigue
  • RA apparently often occurs ‘symmetrically’ – i.e. if you have it one hand, it will also occur in the other. If you have it one knee, it will crop up in the other one too.
  • RA frequently affects the small joints – those in the hands and feet, whereas osteoarthritis often affects the larger joints.

But see all those ‘often’s and ‘almost’s? That’s why it’s so hard to diagnose! The worst of my RA, for instance, has been in my knees and shoulders, so I don’t fit the ‘small joints’ pattern, although it does all affect hands and feet.

The good news as told by Pollyanna Penguin

 If you have osteoarthritis, short of joint replacement and painkillers there’s probably not a lot you can do about it (although maybe glucosamine helps in some way – the jury is out!) If you have rheumatoid arthritis there are treatments available. They are many and varied, and some work for some people and others work for others and you’re really incredibly unlucky they won’t work  for you ; if you’re new to this whole RA thing, don’t panic when you read the blogs all around the RA community. There are hundreds of people out there whose RA is under really good control through drugs and/or other treatments, and as a consequence they consider they have better things to do than blog about arthritis! So those of us who blog tend to be the unlucky ones – although of course there are exceptions. I’m on the fence here – I’m a lucky one – things are pretty much under control, and I only blog once in a while when I have something to say or those nice folks over at IAAM ask me to!

There are many medical treatments out there, and there are new ones coming out quite often too. The new ones, largely ‘biologics’ tend to be very expensive at the moment so your doctor will probably start you off on some of the older ones, which are ‘cheap as chips’ as one of the rheumatology nurses at my hospital put it. I’m on that old stalwart methotrexate. It’s the most commonly used drug I think, it’s certainly ‘cheap as chips’ these days, and for me it really works. Some people have nasty side-effects from it though, and for others it just doesn’t do the job. If that’s the case then it can be tried in combination with other things, or you might be moved on to one of the spangly new biologics.

You might, of course, opt to go for a non-medical treatment. My personal belief is that it’s a good idea to get things under control with medicine and then use other things such as physiotherapy (physical therapy is the US translation!), occupational therapy, acupuncture if you think it helps, dietary things etc. added on top, because I believe that this is a progressive disease and that these various medications, although they won’t flat out cure you, can and often will stop the progression, which is hugely important. Other people disagree and use complementary therapies, which seem to help them. It’s your choice – but please, just do your research before you decide!

Support

So, it’s not all doom and gloom – anyone with RA (or osteo for that matter) would rather not have it, but there are things that can be done, and there is also support out there, from NRAS and Arthritis Care in the UK, the Arthritis Foundation (and others I’m sure) in the US and UK, and now from IAAM, the International Autoimmune Arthritis  Movement. IAAM are doing a lot to increase people’s awareness and understanding of what autoimmune arthritis (RA being one kind of that) is, and I’m proud to be a member and a ‘blog leader’ for them. They have  established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event!  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help people with autoimmune arthritis and their supporters in managing their diseases. WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

World Autoimmune Arthritis Day  (WAAD) website link- www.worldautoimmunearthritisday.org

WAAD registration link- http://events.r20.constantcontact.com/register/event?llr=0&oeidk=a07e5n7i1aq5f98d0e9

Happy Birthday

And what’s more, it’s IAAM’s first birthday on May 7th. Slightly in advance Happy Birthday to you, Happy Birthday to you, Happy Birthday dear IA(AAAA)AM*, happy birthday to you.

* Can’t sing it properly without some extra As!

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