Tags: rhematoid arthritis, rheumatology, RA, Rheumatoid arthritis, arthritis, joint pain, GP, doctor, NHS, medicine, R.A., folic acid
I’m Pollyanna right? I can do this glad-game thing! OK, I’m glad I’ve had to go to the surgery and the chemist three times this week because it’s given me an opportunity to enjoy more of the beautiful spring weather (in between the showers). I’m glad the doctor completely screwed up my last prescription in three different ways, because otherwise I wouldn’t have had that lovely experience I’m so glad about. I’m glad that I had to go in to the surgery reception tonight and point out that even after a conversation with the doctor yesterday, he had not sorted out the correct repeat date for my folic acid, because if I hadn’t, I wouldn’t have had that amusing conversation with the receptionist about kicking her cat.
Hmm … doesn’t sound too convincing, does it, really? Well I am at least trying – but it’s very trying, especially as I’m still at the tail end of a flare.
Here’s what happened – in brief – I hope, although I do have a tendency to waffle on, as you may have noticed.
I put in my repeat prescription as normal, picked it up Monday, got it home and realised that my folic acid was missing. As my folic acid was the only thing I’d run out of (I just ordered all the RA drugs at once to save another visit to the chemist) I was a bit peeved. I contacted the surgery reception and had a conversation something like this:
Polly: I’ve collected by repeat scrip but it doesn’t include my folic acid.
Receptionist: Ah … let me look it up. Oh I see, that’s because you’re not due any until March.
Polly: Yes I am, I’ve run out.
Receptionist: Oh no, you can’t have. You see it was issued last month, and you take it three times, on Wednesday, Friday and Sunday.
Receptionist: So that’s three times a week
Receptionist: And they issue you twelve, so …
Polly: Yeeeeeeees …
Receptionist: <lightbulb going on> Oh! That is actually a month’s worth, isn’t it?
Receptionst: Oh … in that case it looks like the doctor’s made a mistake.
Well, to cut a long story short(ish) that wasn’t the only mistake he’d made, so although I was able to have my folic acid rushed through and pick it up in time for me to take it on Wednesday, I then realised there were two other things (non RA-related) also missing from my prescription! I checked the repeat prescription paperwork and it quite clearly said that those things were due now … and that the next batch of folic acid was due in … April.
So I phoned again and asked for a doctor to call me back to discuss this, which he duly did! I had a very pleasant conversation with him, while being driven to my mum’s house by a colleague in order to turn off mum’s faulty burglar alarm … but that’s a whole nuther story … and, after an entire repeat of the conversation with the receptionist – ‘You take it three times a week … we issue twelve … OH!’ etc. he assured me he’d change it on the system and also put through a prescription for the other two things.
Tonight I went to pick them up, feeling happy, relaxed and full of the joys of spring. I went into the chemist and sure enough they did have my other two items ready. Hurrah. Then, foolishly perhaps, I checked the paperwork. Instead of saying ‘Folic Acid – due 26 March 2014’ in nice, neat print, it said ‘Folic Acid’ and then 26 March 2014 scribbled in in biro over the printed ’26 April 2014’! All very well except that a) I could do that myself, and indeed when I next put in a repeat request the doctor (probably not the same one) would assume I HAD done it myself and just not issue me any, just like the last two months and b) what happens when I want some more in May or June or whenever and the issue date is for two months down the line again?
So I went in and, having honestly been really nice and polite to the receptionist the first time (and not mentioning breathtaking incompetence at all), and really nice and polite to the doctor (in spite of mum’s alarm going off in our ears in the middle of the conversation), this time I blew my top, flipped my lid and generally had a big squawk! The receptionist was lovely – didn’t apologise exactly, they never do I’ve noticed, and neither do the docs, probably terrified if they say sorry I’ll sue them for something, but was very helpful. She put in a note for the doctor saying it did need to be changed, please, and suggested I call tomorrow to find out if it’s actually been done. (She obviously has as much faith in the system as I do!) When I said that I was sick to death of going in there and had had to come in three times in the last three days she said, ‘You should try working here. I love my cat, but honest to God I go home each night and want to kick it!’ Don’t tell Enormous Cat, but this evening I knew how she felt!
Tags: arthritis, Arthritis Research UK, fundamental science, joint pain, medicine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Rheumatoid Arthritis Pathogenesis Centre of Excellence, rheumatoid arthritis research, rheumatology, scientific research
Look around the RA blogging community for a while and you’ll see some consistent themes. One is that it’s hard to explain to Joe Public what RA is – another is that most of the drugs are by-products of research into other diseases (methotrexate for example, and most of the biologics were developed as cancer treatments) and there is little fundamental research into RA.
That picture has been getting better over the last few years, and it’s taking another step in the right direction. Arthritis Research UK, along with the Universities of Glasgow, Newcastle and Birmingham, is funding a major new initiative, the Rheumatoid Arthritis Pathogenesis Centre of Excellence, to be run from Glasgow. The centre’s main focus will be on why RA starts, why it attacks the joints, and why it doesn’t stop. These are fundamental questions, basic science, but the answers, if they can find them, are likely to lead to a host of potential new treatments.
As I understand it the ‘centre’ is virtual rather than physical, but it will mean the three universities and other partners undertaking major collaborations into these fundamental areas.
Science is a slow business – results may be a long time coming – but it’s great to know that there is a good level of funding for this fundamental research into rheumatoid arthritis.
And remember – if you’re based in the UK too, you can get 20% of Physicool products until 9 November 2013.
Tags: aches, arthritis, doctor, joint pain, knee, methotrexate, MTX, NHS, nurse, pain, physical therapy, physio, physiotherapy, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, tiredness, work
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!
Tags: aches, broken bones, doctor, GP, joint pain, NHS, osteoporosis, pain, polymyalgia rheumatica, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, rickets, stiffness, sunshine, vitamin D
I’m calling this Vitamin D-tail because it’s vitamin D in detail. I suppose it could have been Vitamin D-tale – the tale of vitamin D, but anyway, after my rambling and vague post about Vitamin D, Eileen in Italy posted a rather long comment, which I suggested we expand into a guest post, and here it is.
Eileen is a graduate of physiology and worked in the NHS before moving abroad. She has polymyalgia rheumatica, and spends a lot of her time making medical stuff comprehensible for other sufferers. As you will see below, she has a knack for this!
Vitamin D – you’ll probably have seen a lot in the media over the last few months. You might even have asked your doctor about it and probably got a dismissive “You get all you need from diet and sun and it isn’t important.” In the words of the song: “that ain’t necessarily so!”
What is Vitamin D?
Vitamin D isn’t really a vitamin – it is something called a pro-hormone and is made in the skin by the action of the sun’s rays on cholesterol and stored in the liver to be used to make a variety of different hormones. It is very important for the way the body uses calcium – without enough vit D you may have a low level of calcium in your blood and, in the long term, you may not build bone properly.
Why do we need it?
The original importance of vit D was seen as preventing rickets in children and it helps prevent osteoporosis in adults. However – that isn’t all: it is now thought that it is involved in many processes in the body and being deficient can give you aches and pains in your muscles and joints and contribute to depression and may be particularly significant in autoimmune disorders. More and more research is suggesting, too, that the amount we need is really much higher than what they have been saying for years.
Where do we get it from?
Many GPs still believe you get vit D from food – in fact you get less than 10% of even the amount they say you need in food. It is found in oily fish, salmon, mackerel, herring, tuna, for example. It is highest in wild fish – and even then you would need half a pound of salmon every day to get what you need – but much lower in farmed fish so you would need more. Tinned tuna in oil has far less than fresh – and the “healthy” version in water has almost none left because of the canning process. Other than that you could have a 17 egg omelette for lunch, or a couple of kilos of mushrooms. When you see in an article that “fortified” foods provide vit D that mainly applies for the USA where milk, orange juice and cereals have vit D added to them. Not so in the UK where margarine is described as fortified – but only so that it has the same amount of vit D as butter! The food with the highest level of vit D is fish oils – maybe great grandma knew something when she got the bottle and spoon out! But you must not rely on cod liver oil – it also has a lot of vitamin A in it and that is dangerous if you take too much.
The main way to get enough is being out in the sun: about 20% of your skin needs to be exposed to the sun between about 11am and 3pm in order to be able to manufacture enough. But there are problems with this in the modern world and living in northern climes. The skin factory is most efficient at the age of 20, from then on it starts to slow down gradually anyway until at age 70 it is at less than 25% capacity. As you get older, you wear more clothes and spend more time indoors during the middle of the day doing boring things like work, looking at that lovely sunshine through the window – which blocks the essential wavelengths of light. When you do go out you use sunscreen – many foundations now contain Factor 15 and even Factor 8 sunscreen reduces the amount made by over 90%. And we have had it drummed into us that we shouldn’t go out in the midday sun and always “slip, slap, slop”. Anyone living north of Turin in northern Italy is so far from the equator that between October and May they won’t make enough vit D from the sun – the sun’s rays have to strike your skin at a high angle to flick the switch to turn the machine on, once your shadow is longer than you are tall – the sun isn’t strong enough. The further you are north, the less you make. So that means that you have to store it up between May and September – and then you get a summer like last year! In children, all this is added to by the fear of letting children out to play and their desire to play on computers rather than on the swings. And if you have dark skin or a suntan – your skin factory takes even longer to make vit D.
What are the issues if we don’t get enough?
I live in northern Italy, just slightly north of the level of Turin, and it is reckoned by our local osteoporosis expert that even here more than 80% of the population (both men and women) are vit D deficient and that increases a lot of risks as they age. Obviously most people know about osteoporosis and resultant broken bones – but fewer know about its role in muscle health. Severe deficiency can lead to similar stiffness and aches to those that many people with arthritises are familiar with. A few weeks of very high doses may improve that dramatically. It is something that should always be checked to rule it out with regard to one particular arthritis, polymyalgia rheumatica, as the symptoms are so similar. There’s nothing to say you aren’t suffering from both, but improving your vit D status rules out one cause. As we age we tend to fall more (another factor increasing your fracture risk) and studies have shown that improving vit D levels reduces the number of falls and broken bones the elderly have as well as improving their balance in general, walking and ability to get up from chairs unaided. In fact, it is thought that simply making sure residents in homes are drinking plenty and improving their vit D would prevent a large proportion of the falls that are so common and can lead to hospitalisation.
Getting a test
A request to your GP to check your vit D level is often met with some degree of scorn but anyone with an autoimmune disease should have it checked because low vit D and autoimmune disease are associated but it isn’t known whether it is cause or effect – and everyone who is told to take “bone protection” medications (bisphosphonates or alendronic acid) should also have their vit D and calcium levels checked first because they don’t work if you are low on either and they can reduce your calcium levels even further and make you ill. It is stated in the drug information by the manufacturers – some doctors tend to think they know better. Someone I know was allowed to have her vit D checked with a very patronising attitude by the GP: “It’s very expensive you know, about £200”. It isn’t, it costs about £25 and, as a last resort, a hospital in the Midlands offers it to anyone by post as well as to NHS hospitals!
What do you do once you know what your vit D level is?
The level at which you are said to be deficient varies from one NHS Trust to another. As an example, however, Gateshead Trust in the northeast of England recommends a range of 48 -144 nmol/litre as being adequate. Below 25 they say it should be treated with high dose vit D3 – and by high dose they mean 60,000 IU a week for 12 weeks! That, of course, needs to be done under medical supervision although if you are very deficient the likelihood of adverse effects is not very high. Between 25 and 50 they recommend supplements of 1,000-2,000 IU a day for 12 weeks, and it is easy and relatively cheap to obtain tablets for that sort of dose from Boots or Holland&Barrett. Once you are what they describe as “replete” you should continue with 800-1,000 IU/day, especially in the winter but also if you are not getting out into the sun much. Even with supplements some people find their vit D level falls quite rapidly so having your vit D checked every year or if any symptoms that disappeared with being given vit D return may be a good idea.
Be careful though: if you are on the standard “calcichew” supplements given to you if you take prednisolone, do not just take extra tablets to increase your vit D intake (whatever your doctor suggests). Taking calcium and vit D supplements together can sometimes cause kidney stones or “grit” which can irritate your bladder. You need some extra calcium because of taking prednisolone (it makes you lose more in your urine) but too much is not a good thing. If you need more vit D than the 800 IU in two tablets then buy pure vit D tablets and take both. You should not take more than 4,000 IU of vit D a day unless your doctor tells you to but 2,000 IU is a perfectly safe dose for most adults.
And if you want to top up your vit D the skin way: it is safe to stay in the sun with no sunscreen for about 10 minutes, or the time it takes to start to get a tiny bit pink and warm and Cancer UK has issued some guidelines for safe sun exposure rather than the previous “don’t go out in the sun” mantra. Low vit D has also been associated with depressive mood and with SAD (seasonal affective disorder) but going out in the sun for a walk will achieve a lot in terms of making you feel better. All the UK needs now is some sun!
A few references:
http://pain-topics.org/pdf/vitamind-report.pdf Pain relief through vitamin D
Tags: aches, arthritis, consultant, doctor, fibromyalgia, flare, flare-up, hands and feet, hospital, joint pain, knee, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
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.
Tags: aches, arthritis, fatigue, flare, flare-up, joint pain, knee, R.A., RA, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, work
Today was my first day back at work – knee flare seemed to be pretty much over: the swelling had gone right down, it didn’t feel terribly hot, but it was achy now and then. Hurrah.
However, now the other knee had started to ache – RA, or just a reaction to me walking ‘funny’ because of the left knee flaring? I don’t know – but to add to the mix, today being my first day back at work meant it was also the first day since the holidays where I haven’t spent a significant amount of time with my feet up – and I’m really feeling that this evening, as I sit here typing with an ice pack clamped between my knees, and the heat pack waiting for me in bed!
Here’s the thing though – we’re moving offices tomorrow!
Fortunately hubby has the day off and has been volunteered, slightly unwillingly but with good grace, to be my feet, and the facilities manager in the building is also going to help us lug stuff, and then my two colleagues are both fairly fit … so hopefully I can pull out a conductor’s baton from somewhere and just direct operations!
Tags: aches, arthritis, flare, flare-up, joint pain, knee, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
Well, whadayaknow? A knee flare turns out to be some kind of strange ‘dance’ move: you can see it here. Unfortunately it’s also what I’m having one of right now …. I’m dancing too: from the freezer to the microwave and the microwave to the freezer … mostly on one leg.
It started on Boxing Day evening – that’s Wednesday for those outside the UK! Just mild stiffness going upstairs – didn’t really think too much about it. Progressed to serious stiffness Wednesday morning which I assumed would pass of during the day. It didn’t. It got worser and worserer. By Wednesday evening it had started to be painful as well as stiff. I took paracetamol and grumbled.
Thursday my mum was doing a lunch for us and some friends. Splendid meal, good company but my sociability somewhat dampened by knee pain. That evening Mum asked if I did ice-packs or heat packs? DUHHH! Why oh why do I always forget those things?!
Pretty much since then I’ve either had an ice pack or a heat pack on it, or I’ve been moving around on it. It makes a huge difference. I can’t believe how stoooopid I am sometimes! But on the bright side, at least it’s starting to mend – or if it isn’t, then at least I’m starting to feel better.
Tags: arthritis, flare, flare-up, joint pain, pain, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, thumb
I’ve been cruising along very nicely thank you for the last few months. I made the mistake of getting used to it I think … Great, I feel fine … let’s get on with stuff then. Well, you only live once, people to see, things to do, natural history surveys to complete, courses to go on, friends to see … Spanish to learn, embroidery competitions to enter.
Next time I see my rheumatologist, I thought, perhaps we can talk about reducing the MTX.
When will I learn?!
It started a couple of weeks ago with sudden, severe pain in my right thumb. Then it went away. I didn’t see it as a warning sign – I’d got too used to being footloose and flare free. Then it came back … and then other bits started to hurt too … ooooooooh-k, maybe this is a flare, I thought.
And it was.
Fortunately not a terrible one – one of my flare-ettes/aka fizzles, but bad enough to act as a little reminder. It’s over now … I think … but I’m back to being careful …
Well, apart from botanical drawing class an hour’s drive away on Saturday, more natural history recording on Sunday, interviewing tomorrow …
Tags: dentist, flare, joint pain, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve just been for my regular three-monthly dental check-up. It was the nicest and most uplifting dental check-up I’ve had in my entire life, punctuated not by drills and pokey things but by comments from the dentist like, ‘Gosh, you’re doing a fantastic job looking after those gums!’ and ‘Yes, things are looking really good here’ and ‘You’re obviously brushing really well.’
Then he made an interesting point, and one that I’m sure is right. To summarise (as he can waffle on a bit), he said it’s amazing how everything comes as a complete package; when my arthritis was bad, my hands weren’t great (and certainly my arms), and consequently even though it wasn’t a conscious thing I probably wasn’t brushing as well or for as long. On top of that I was generally feeling pretty rotten and it’s entirely possible that a day went by here and there without me even giving teeth a passing thought. I’ve been really well now for a good few months, with barley a flare, and not that many twinges (except that blasted left knee, which is still a bit of nuisance), and my shoulder (non-RA) is recovering well, and as if by magic my teeth are doing fantastically too.
If you have severe RA those holistic effects must be blinding obvious, but I thought it was quite interesting that even with a very mild condition like mine, there are differences that can be seen in the most unexpected places.
Tags: arthritis, autoimmune arthritis, diagnosis, doctor, fatigue, GP, IAAM, joint pain, knee, methotrexate, MTX, NRAS, nurse, occupational therapist, OT, pain, physical therapy, physio, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tiredness
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!
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
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!