‘I just can’t do it anymore doctor. I’m a wreck’.
Mary is a widowed 72 year old lady who has a bad back, sore wrists and shoulders and as a result, has difficulty sleeping and sometimes even dressing herself can be a struggle. These symptoms make her own life difficult but her main concern is not for herself. She’s afraid she’ll no longer be able to care for her 2 preschool grandsons.
She’s helping out her daughter who has had to return to work to help make ends meet now that her husband’s salary has been cut. Her daughter drops the two boys round on her way to work, 5 days a week, and picks them up on her return.
Its a long day, but Mary is glad to be able to help out. She loves the kids and enjoys spending time with them but the physical and emotional demands of feeding, changing, cleaning up and entertaining them is taking its toll. She feels that her arthritis pains are worse, finds it difficult to make time to visit her friends, exercise or to attend her hospital clinic appointments.
She’s not alone. As the financial pressure mounts on cash strapped families in this recession, grandparents are more frequently being asked to give a hand with childcare. Even during the financial boom, unpaid relatives were the main source of non-parental childcare in 11.5% of preschool children. There’s an increasing proportion of single parent families of whom 1/3 will avail of the services of an unpaid relative to help with childcare. For many Irish grandparents, there’s no escape either. In Ireland, 20% of grandparents live in the same house as their grandchildren and up to about a third live within 25 Kilometres.
Looking after small kids is hard work. I frequently see young mums (more so than young dads…) overburdened with the physical and emotional demands of raising small children in my practice. Perhaps its not surprising that older people, particularly those with a pre-existing condition such as arthritis might struggle in the same situation.
However, a 2007 study found no evidence that ‘caring for grandchildren has dramatic and widespread negative effects on grandparents’ health’. It did suggest however that likelihood of negative impact of grandparent health might be determined by the particular circumstances and ‘workload’ circumstances of the carer. For example, there might be a positive health advantage to those doing a little babysitting, but potential for problems where the grandparent is helping out in ‘skipped generation’ families (where the parents are, for whatever reason, absent), or those who provide ‘live-in’ care. It clearly depends on the circumstances.
Although there are no hard and fast rules to how to manage requests for looking after grandchildren, and I’m always cautious about offering life advice to my elders, here’s some of the advice.
1. If you enjoy looking after your grandchildren and feel up to it, keep on going! You are unlikely to do harm to your health and you are providing a great service to your children and your grandchildren.
2. In order to care effectively for grandchildren you need to look after yourself. This means making time to exercise, socialise with your friends and (if necessary) see your doctor. If you don’t have a hobby or outlet, get one. Its easier to say no when you’ve got an Art class to go to.
3. If you feel the need to set limits on your commitment, its better to do it early. Before the baby is born is ideal or at the very least, very soon after. It gives your family time to set realistic expectations and time to make alternative arrangements.
4. Don’t move in if you can help it. There’s evidence that grandparents who co-habit fare worse with their overall than those who live independently As nice as it is to spend time with your grandchildren, its nicer doing so knowing that you can give them back.
5. If you find that you are not coping physically or emotionally and don’t feel comfortable or guilty bringing it up with your own children, it can be helpful to involve your doctor. I have, for example, written letters to my patients to ‘recap’ on advice given at clinic regarding the need to pull back form childcare which they can in turn, show to a relative.
Here’s a little bit of extra advice from Ile Nastase, the veteran tennis star on the benefits of exercise and of having small children around.
This month, to the embarrassment of my children, I have decided to record a series of online educational video’s online. I have decided to start with rheumatoid arthritis.
Whereas I have an idea of the sorts of questions that people who live with Rheumatoid arthritis want answered (as I get asked them every day), I would really value the input from patients who have RA or those caring for them at home.
I have decided that the video’s are to be short (1-2 minutes in length) and to break topics down in to small bite size chunks eg. ‘What re the side effects of methotrexate’ rather than ‘Here’s eveything you need to know about Methotrexate’.
Please ask anything you’d like answered and I’ll do my best to put together some decent answers. I’ll be giving emphasis to the those questions which I think will benefit the group as a whole.
Thanks for your input and support.
In my first few months working as a rheumatologist a referral letter arrived from a local doctor about a lady with rheumatoid arthritis. She had recently moved to the West of Ireland from the UK, where her original diagnosis had been made. Her GP had originally referred her to a general physician in a small local hospital who had struggled with her care and she was looking for second opinion.
After assessing her, it quickly became apparent that original diagnosis had been incorrect. The patient had numerous explanations for her pain other than rheumatoid arthritis and the investigation that was likely to have prompted her original diagnosis (a positive rheumatoid factor test) as due to the fact that she had Sjogren’s syndrome (a condition which causes dryness of the eyes and mouth).
My specialist pride congratulated itself on making such a clever diagnosis and for being smarter than either the physician who had cared for her of late or the rheumatologist who had made the original diagnosis. Gosh I’m good, I thought.
‘That’s wonderful news Doctor. You mean I don’t have rheumatoid arthritis after all?’
‘Not in my opinion you don’t.’
‘Its great to see someone who knows what he’s talking about. Do you mind me asking where you did your training?’
‘In the UK. In Cambridge mainly.’
‘Really Doctor? In Addenbrooke’s?’
‘I was there for 4 years.’
‘That’s amazing. That’s where I was told I had rheumatoid.’
With that she thanked me, stood up to leave, and just before she left the room, turned to me and said;
‘I knew you looked familiar.’
It’s never a bad idea to get a second opinion. Even if it’s from your self.
Here’s a TED talk by Dr. Brian Goldman, who’s an Emergency room physician from Toronto speaking about medical errors.
Woody Allen’s 1970 movie ‘Sleeper’ introduced its audience to a fictional, futuristic device called the Orgasmatron. This remarkeable invention was capable of inducing physiological changes (of a pleasurable kind) in those placed within it. I sometimes wonder how much Woody Allen’s contraption was influenced by a device with a similar name from the early 1960′s in which the earliest scientific experiments on the effects of weather on arthritis symptoms were performed.
The Climatron, as it was referred to in media reports of the time, was used by Professor Joseph Hollander, a Philadelphia based rheumatologist to determine the effects of the weather elements on the symptoms of arthritis patients. The device was basically a hotel room sized chamber (with room service) which was designed to comfortably house two patients for periods of two to four weeks. Using a system of valves and dials, it was possible to adjust the temperature, humidity, rate of air flow, barometric pressure within the chamber.
In his experiments, a small group of largely ‘weather sensitive’ arthritis patients, were recruited to come and stay in the Climatron. A number of times a day they completed a diary documenting various aspects of their health including assessments relating to their joint symptoms. They were also examined by a doctor and had their joints assessed. None of the subjects were aware that the main focus of the research was their joint symptoms and were not informed about changes being made to the weather variables within the chamber.
When individual weather variables were adjusted in the Climatron, none of the subjects noted any difference in their joint symptoms. However when an attempt to reproduce the weather conditions of imminent stormy weather (simultaneous increase of humidity and reduction in atmospheric pressure) the effect on symptom worsening was significant in 7/8 of the rheumatoid patients and in 4/4 of the osteoarthritis patients. When this experiment was completed a number of times, those who noted a worsening did so about 3/4 of the time.
This was one of the first scientific attempts to correlate arthritis symptoms and the weather. Whereas the results are tantalizing, its hard, in view of the small numbers of patients studied, to draw any firm conclusions.
Arguments for there being a link
The strongest suggestion that arthritis symptoms are affected by weather is from patient surveys. About 2/3 patients in some studies state that their pain is worsened by certain weather changes. Some report how their joints help them predict the imminent arrival of wet weather, some note a dramatic improvement in their pain while on holidays in the sun (only to deteriorate on their arrival home ) and some even notice a worsening of their symptoms during heat waves. Whereas surveys are interesting, they don’t necessarily prove the link.
However, there are also some semi-plausable mechanisms as to how weather might affect joint symptoms; We know that joints contain pressure receptors (baro-receptors) for example. Couldn’t changes in atmospheric pressure therefore be detected within joints ? The problem is that the sorts of barometric pressure changes seen with weather fluctuations are small and only of the sort of magnitude that might be experienced going up and down in a lift or on an airplane journey. It is also true that the physical properties of tendons and cartilage can be altered by temperature changes but again, this has only been shown in laboratory experiments using extremes of temperature not usually seen in the environment . There’s even some evidence that levels of inflammatory proteins (cytokines) have been shown to decrease in patients undergoing hot spa therapy with inflammatory arthritis and of course heat (or cold) applied directly to joints also seems to help some patients too.
What’s surprising therefore is how prospective scientific studies over the years have failed to show a consistent relationship between various weather variables and arthritis symptoms.
This is at least partly due to the fact that these studies are difficult to do. If the weather were a new drug and researchers were trying to determine its effectiveness in the treatment of arthritis, we would be obliged to ‘blind’ both the patients AND their assessors to their weather treatment (a wet day, dry day etc). Its hard to be ‘blind’ to the weather. Unless you spend all of your time indoors – but then you are not being exposed to the weather changes (other than barometric pressure) either. People also wear clothes most of the time, which alter the humidity and temperature around joints and which could ‘blunt’ any effect that external factors might have.
Other investigators point to the difficult confounding role of psychological factors. Where someone with arthritis holds a belief, for example, that damp cold weather worsens their symptoms, they are psychologically more likely to place emphasis on information that reinforces this idea. They might be more likely therefore to remember those days where their joints were bad AND where the weather was damp and cold but not place emphasis on days where the weather was damp and cold and their joints were good. It has also been suggested that bad weather causes patients to feel depressed or to become inactive – both factors which have been shown to worsen pain.
What’s the bottom line:
Although the data is confusing, I tend to believe my patients when they tell me there joints are effected by the weather. This is true for some patients but not for all.
In my opinion, and despite and firm to data to back it up, I believe the following;
1. That arthritis is not caused by cold or damp weather. There is no evidence whatsoever that this is the case.
2. Where weather has an effect on arthritis, it is solely on the symptoms of the disease and has no effect on disease progression or structural damage.
3. The effect of weather on arthritis symptoms varies from patient; as a rule I would have said that most patients prefer dry warm weather to cold damp weather. Patients with poorly controlled rheumatoid arthritis can occasionally flare when its very hot.
4. The better controlled a patients disease, the less they will notice fluctuations with weather changes. This is particularly true of patients with inflammatory arthritis (eg rheumatoid arthritis, psoriatic arthritis).
5. Emigrating for a better life with your arthritis is probably not a good idea. If an improvement is noted on moving to another country it is quite often temporary. Uprooting yourself from the support network of your family and friends isn’t a good idea and then there’s the stress of moving to another culture, negotiating another health system etc.
6. As with all things that you can’t control its probably better not to stress about it too much. You can’t control the weather…
One of the realities of Ireland’s fall from economic grace is the large numbers of people emigrating from our shores in search of a better life.
I know this because amongst them are some of my younger patients in my practice, many of whom are afflicted with conditions like rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis. Whereas many of them are doing well on treatment, and seem quite up-beat and excited to be considering the idea of a few years away, there are some downsides to consider. This is particularly true for those who are on biologic treatments for their arthritis.
Biologic therapies are a group of modern, hi tech and effective treatments for certain types of arthritis. They are also very expensive. The annual cost in this country for a patient treated with once of these drugs ranges from €15,000 to €20,000.
Although many gripe about the state of the Irish health service, one of the things it does very well is provide funding for these drugs. At present (although likely to change) there are very few restrictions on a Irish rheumatologist’s ability to prescribe biologic therapies for arthritis.
Every Irish citizen is entitled to have the costs of subcutaneous biologics (e.g. Enbrel, humira, Simponi, Cimzia) covered (subject to shortfall) through a fund known as the ‘HiTech scheme’. This is usually subject to maximum shortfall per family of €132 per month and about a third of the Irish population who have a medical card (those over the age of 70yrs and those below a certain income) which entitles them to (almost) free medical care where they have to pay 50c per month per item on their prescription. The centrally funded Hi Tech scheme (which is ring fenced from other health service costs), does not cover the costs of the Intravenous biologic drugs (e.g. Remicade, Roactemra and Orencia). These are usually funded through local hospital budget (much to the chagrin of public hospital administrators). Those with private health insurance have the costs of intravenous drugs and related infusion costs met by their insurer (a bit less than 50% of the Irish population carry health insurance).
For those patients who are considering changing jurisdiction there are always two considerations when it comes to getting continued access to your regular arthritis medication.
1. The first is that a change in country means a change in rheumatologist. Where your new rheumatologist will effectively be the gate keeper to access treatments, your ability to get access to these drugs depends wholly on your new rheumatologist agreeing that biologic therapy is appropriate for you. Whereas consensus for patients with more severe forms of arthritis is unlikely to differ, there are often grey areas where opinions may vary. The decision making process however is more likely to be informed by local funding issues.
2.Funding for biologic therapies is much more restricted in other countries. For example, in Australia, access to biologic therapies for anklosing spondylitis is restricted to patients with a certain grade of severity of AS on Xray whereas in Ireland it is wholly at the discretion of the treating rheumatologist.
3. Even where you have Irish private health insurance, it will usually only cover you for emergency treatment abroad for a certain period.
What is the best advice for those thinking about emigrating who are on treatment?
1. Be aware that you may not automatically entitled to access to biologic treatments abroad. The HiTech scheme in Ireland only covers the cost of drugs of patients living here.
2. If you are thinking about emigrating, discuss it with your rheumatologist before making any firm decision. He/She may be able to recommend a rheumatologist and initiate contact for you.
3. Firmly establish the funding guidelines and restrictions on prescribing of these drugs in your target country and ask your rheumatologist for advice. I have included links to the UK (NICE) guidelines (for Rheumatoid arthritis Ankylosing Spondylitis Psoriatic arthritis , Australian Medicare guidelines (Rheumatoid arthritis , Ankylosing Spondylitis, Psoriatic arthritis) and Canadian guidelines. US regulations are much more complicated. I think it would be fair to say that having health insurance in the US would be imperative and that you would need to establish from the target insurer what their coverage guidelines are. Get it in writing!
If you are a patient in a country other than Ireland who has guidance you’d like to offer to foreign patients thinking of emigrating you your country, please add a comment.
To most medical students and patients uninitiated in the science of rheumatology, the diagnostic process whereby rheumatologists assess patients may seem bewildering. When considering any patient who presents with joint pain, there are over 100 types of arthritis to consider, lots of conditions which mimic arthritis, a huge array of blood tests to consider and any amount of expensive imaging tests at our disposal. Sounds complicated? It’s not as hard as it seems. When you take gout and joint infections out of the mix (usually easy to spot if you know what you’re doing), you are really trying to determine if your patient has one of two categories of joint problem; a problem relating to joint degeneration or one relating to inflammation.
Only two types of arthritis to consider. That shouldn’t be too hard to do now should it? Here’s some of blood tests that help us do it;
Inflammation blood tests (ESR, CRP)
The results from these two readily available and relatively inexpensive blood tests are probably the first tests any rheumatologist looks for on a patient are the ESR (‘sed rate’) and CRP. These two complementary blood tests help us differentiate between patients with active inflammatory arthritis (eg rheumatoid, psoriatic, reactive arthritis, undifferentiated inflammatory arthritis, ankylosing spondylitis) and those with degenerative joint problem or with other causes of their pain. Although they can be become elevated in conditions other than arthritis (infections and malignancies for example) I tend look on them as measuring the ‘temperature’ of any inflammatory process. The higher above the normal range they are, the more intense the inflammation present. In certain disease states (eg rheumatoid arthritis), very high levels can help us identify patients at higher risk of damage. The closer to the normal range they are, the less likely a patient it to have an inflammatory process. These tests are also used to help monitor the activity of inflammatory arthritis and its response to treatment (one of the ways we know treatment is working is that the CRP / ESR falls during treatment) These tests are not infallible by any means. For a list of pitfalls in their use see below under specific conditions.
Disease Markers (RF, CCP, ANF/ANA)
Once a doctor suspects a patient has inflammatory arthritis, these disease specific tests are used to determine which type of inflammatory arthritis (or other connective tissue disease) they have. Examples of these tests would be Rheumatoid Factor (RF), CCP antibody and Anti Nuclear antibodies (ANA/ANF).
The majority of rheumatoid arthritis will have a positive rheumatoid factor test (‘seropositive’) or a positive CCP antibody (CCP positive). Rheumatoid factors can also occur in some other conditions (eg SLE, Sjogren’s syndrome) but CCP antibodies are usually only present in patients with rheumatoid arthritis. The presence either of these antibodies can help identify patients who are at greater risk of more severe forms of rheumatoid.
There is also some evidence that these antibodies can be present for many years in people before they develop rheumatoid arthritis so be positive in patients without symptoms. The ANF* is usually positive in SLE but can be positive in patients with rheumatoid arthritis. Confused yet?
*Further discussion of the use of Antinuclear antibodies is beyond the scope of this piece
This is the commonest form or arthritis and a condition where ALL of these blood tests listed above should be normal. That means normal ESR, CRP, RF and CCP antibodies unless there’s another condition present alongside the osteoarthritis.
The ESR or CRP may also be normal in patients newly presenting with rheumatoid arthritis. In a large study of RA patients from Finland and US, between 45-47% of patients had a normal ESR, 44-58% had normal CRP at presentation. BOTH were normal in 33% and 42% of patients**. When a rheumatoid factor test was included, 14-15% of patients had no abnormalities in all 3 tests.
Remember that only 70-80% of patients will have a positive rheumatoid factor or CCP antibody (and one can be positive whether the other is negative so we tend to do both) and even greater percentages of pts will have negative antibodies (‘seronegative arthritis’) early on. Having negative antibodies does not therefore exclude rheumatoid arthritis.
It is also well describedthat inflammation can be visible in the joints using MRI ultrasound scans in patients with known rheumatoid arthritis in the absence of inflammation clinically or on blood tests.** the reason there’s two percentages mentioned is that they looked a patients in two different countries (Finland and USA)
Many patients with psoriatic arthritis (approximtely 50%) will have either normal or near normal ESR and or CRP levels. Patients with Psoriatic arthritis will usually have negative rheumatoid factors and CCP antibodies and Antinuclear factors.
Ankylosing Spondylitis / Undifferentiated spondyloarthritis
Ankylosing Spondylitis is a form of inflammatory arthritis (largely affecting the spine). Whereas abnormal CRP and ESR can be very helpful in making a diagnosis of AS in certain patients with back pain, these tests will only be abnormal in about 50% of patients. The rheumatoid factor, CCP antibodies and ANA should be negative in this group of patients.
Palindromic Rheumatism describes a syndrome where there are recurrent episodes of pain swelling warmth and stiffness of joints. The symptoms can have onset over hours and last days – weeks, before subsiding. However episodes of recurrence form a pattern, with symptom free periods between attacks lasting for weeks to months and some of these patients will go on to develop rheumatoid arthritis. It is not unusual for these patients to have normal inflammatory indices (especially between attacks, when they are well) and approximately 50%will have negative Rheumatoid factor and CCP antibodies.]
Making a diagnosis of inflammatory arthritis in patients is usually straightforward but there are some pitfalls to catch the unwary. Whereas the tests can be unreliable in some settings, with the right history and clinical examination in the hands of an experienced rheumatologist, it is possible to make a diagnosis of inflammatory arthritis and offer effective treatment even where the labs don’t quite fit the picture.
Every year I make a pilgrimage to the ‘Virgin Megastore’ of my chosen specialty, The American College of Rheumatology Annual Scientific Meeting.
The meeting, which is the worlds’ biggest rheumatology meeting is held over 5 days and attracts almost 16,000 delegates. The volume of research presented at this single meeting is simply staggering. This year there were over 2,500 scientific abstracts presented (published in a book which is the size of the telephone directory of good sized city). Each of these pieces of research is also displayed in the form of posters over a 3 day period in a hall the size of a football pitch. You need to be in good shape to view even a fraction of whats on display.
There was a time, in recent memory, when it was possible to skim the entire book of abstracts for the meeting during the transatlantic flight to the US (with plenty of time left over for a nap and the in-flight movie). This year, a few hours on the flight and a further couple of hours in my hotel room only got me half way through abstracts presented on DAY ONE by the time day two came along. At that point I simply gave up.
Thankfully, the organizers of the meeting are aware that most delegates will be unable to digest all of the research presented in this way and organise nice, succinct 30min – 1 hour reviews on everything they think we should know about. There’s also plenary sessions where the pick of the best scientific abstracts are presented and discussed by people who know what they’re talking about. Whereas these updates are presented by smart, eloquent speakers with nice slides and data, no single attendee will recall everything that was said at each presentation. This year there were over 400 such sessions. I didn’t get to all of them.
Of course the Annual Scientific Meeting isn’t all about what goes on in the lecture rooms. Even the most diligent of attendee sees the meeting as time to catch up with old friends and colleagues in a non-work environment, keep on gossip, and even do some sight seeing. Although these social opportunities may act in some ways as a distraction to the core meeting, I find that a lot of the important work of the meeting take place precisely in this environment; many of the ‘juicy morsels’ of clinical information are exchanged between colleagues at breakfast buffets, on shuttle buses and even in the Jacuzzi’s, bars and restaurants of the convention hotels.
Given that it is often these brief informal information swaps that I find so potent and informative, I wondered about using Twitter to replicate this sort of information exchange. Twitter is a free online social networking service that enables its users to send and read text-based posts of up to 140 characters (about 20 words), informally known as “tweets”. The format of its short textual summaries closely mimics (to my mind) the short verbal exchanges which help communicate so much information in so little time.
I used a laptop (excellent free Wifi access is essential) to post my tweets and to follow the activity of other tweeters at the conference. For each presentation I attended, I ‘posted’ a number salient, take home points about the presentation with links, where possible, to the source material / speaker.
To be certain of exposure of me tweets wider audience than my relatively limited number of ‘followers’, I also posted my Tweets to a ‘discussion group’ (or ‘Hashtag’ = #ACR2011) for the meeting and also to discussion groups for specific disease (e.g. #rheumatoid #rheum #autoimmune #osteoarthritis). This way, anyone who was interested on following the proceedings of the meeting could see my comments and those of any delegate posting in this way. It was also possible for non attendees to post questions to this on-going meeting discussion which could be replied to by any delegate or observer.
Tweeting from the meeting was a really invigorating experience. The process of funneling of a large amount of information into its distilled essence required a high level of attention to the presentations (much like reading a book for a book-club – knowing you’re going to have to discuss the content later). It made me more tenacious in my pursuit of an understanding of the topic in situations where I might have otherwise allow jet lag or other meeting distractions get the better of me. There’s an implied level of responsibility when communicating information in this way, that demands that you get it right. As a result, I got a lot more from the presentations than I usually do. My Tweets from the meeting have also acted as short aide memoir to the whole proceedings.
The feedback from the my tweeting efforts was very rewarding. I received live comments and questions from rheumatologists in other countries and from many patients. A graph of the influence of all tweeters at the meeting was posted online so I could see the range of people my tweets were influencing . While I was attending a lecture on one topic there colleagues tweeting information from other sessions so I was able to be in two places simultaneously.
I would throroughly recommend getting familiar with Twitter in anticipation of your next big conference. The more you tweet, the more you’ll learn and the more rapidly you will disseminate information to other rheumatologists. Although the Twitter experience hardly replicates the bonhomie, fun and immersive atmosphere of actually attending a conference, using it will add to your experience of the conference whether you’re in Washington DC or in Galway for #ACR2012.
Although as a medical student rheumatology was always associated with an air of mystery and complexity to me – factors which might have aroused a younger me had they been associated with a member of the opposite sex – the specialty didn’t catch my eye at all as an undergraduate. To a medical student cruising for medical action in the 1980′s, rheumatology wouldn’t have got as far as a first date.