I’m sure you’ve read the fact that the majority of lupus patients are between 15 and 45. This is true, but lupus can develop at any age and even though 90% of patients are female it can affect men and children too. Doctors may dismiss lupus if the patient falls outside the 15 to 45 age range and this may lead to even further misdiagnosis.
As I’ve said many, many times, lupus is a tricky illness to diagnose even for a specialist. So imagine if a child or an older person goes to their GP complaining of joint pains and exhaustion, it’s likely in both cases that would be dismissed as ‘normal’ for their ages.
1 in 5 patients actually develop lupus in childhood. In children, the disease tends to be more severe at the beginning, with more organ involvement Having said that many children with lupus will do very well.
There is also something called late onset lupus, generally accepted as being over 50 when lupus manifests itself, although some doctors believe over 65 should be the rule to be categorised as late onset. Patients with late onset lupus generally exhibit a milder disease with less major organ involvement and lower levels of disease activity. As mentioned previously only 10% of lupus patients are male, but males are more likely to get late onset lupus and strangely Caucasians are also more likely to get it, whereas normally lupus affects more people of African and Asian ancestry than Caucasian.
The issue with late onset lupus is that as people get older they also have other medical conditions, so the outcome for people with late onset is no better than with people diagnosed at an early age.
I have had lupus since my late 30’s, so I’m pretty ‘typical’ of a lupus patient and noticed that as I get older my lupus seems to cause me less problems. I do still get flares, but not as frequently as they were and often they’re much more short lived. So is it possible that as you get older lupus can start to improve and is there anything we can do to help?
I wondered if it was because after over 20 years I have now ‘got used’ to lupus, but it would be hard to ignore the intense pain it can cause. Also, if you’re wondering whether the medication I am on is working, I’m actually not on any medication and haven’t been for years. I did try antimalarials and steroids but decided that I would try lifestyle changes i.e. diet and exercise and found it worked for me. This is not the route for everyone so please note you should never ever stop medication without consulting your doctor first as this can be very dangerous. I’m monitored by a specialist on an annual basis to ensure that I remain stable, as you know lupus can turn on you very quickly so you have to be checked regularly.
As I got older I developed osteoarthritis (it’s an age related disease so a lot people over 40 have it in some form) and I discovered that exercising helps that pain immensely, infact, now I’m too scared not to exercise as otherwise my body punishes me and the pain returns very quickly. It’s a well known fact that lupus also loves exercise, so it’s very beneficial for lupus patients. Again if you haven’t exercised for a long time or are unsure of what to do consult your GP before starting an exercise programme as there’s plenty of advice available. You should look at low or no impact exercise such as swimming, yoga, tai chi etc. I do rebounding which I highly recommend (I’ll write about that in a future blog if you’re interested). There’s some form of exercise for everyone no matter what your age, it’s now believed that Tai Chi is as beneficial as Zumba! Click here for information.
I’m convinced that the lifestyle I lead, watching my diet (keeping my weight down, mainly as it takes extra pressure off my joints) and exercising regularly, plus not smoking (smoking is one of the worse things you can do with lupus), only drinking occasionally etc etc has helped keep my lupus happy. Yes it is a bit of an effort, making time to exercise and cook food from scratch, but when it comes to my health I want to keep as well as possible for many more years to come. If it keeps my lupus and arthritis manageable then it’s well worth it.
I also think as I get older I’m less stressed, I don’t worry about the small inconsequential things that I used to and I definitely don’t ‘sweat the small stuff’. So that will doubtless help as stress is a big trigger for lupus.
One thing that I’m sure has something to do with my disease activity is hormones, I have long since passed (thankfully seamlessly) through the menopause so less hormones going crazy every month. Lupus is linked to hormonal activity, are you female and feel worse just before a period with more joint pains etc (I always did)? If so that may be due to your hormones. After the menopause some women see a marked improvement in their lupus. Professor David D’Cruz says : “Lupus is clearly driven by female hormones though researchers are still struggling to unravel the precise mechanism by which oestrogen's influence the immune system.
The majority of patients do experience improvement in their symptoms after the menopause. Very occasionally, for reasons we do not understand, lupus continues to be active after the menopause.” See Saiv’s story here.
So maybe there is a possible upside to getting older with lupus?
Sadly, in some cases lupus may worsen with age, this is often due to the damage lupus may have caused in the past. Also the damage caused by the drugs used to treat lupus, for example steroids such as prednisolone can cause osteoporosis. So you may have to cope with not just lupus but other conditions too and sometimes one condition seems to set the others off.
It’s never too late to make some changes which will help with your lupus and also other conditions as you age. Certainly stopping smoking, limiting alcohol, exercising and healthy diet are things that are good for everyone, but particularly for lupus patients. As with people of any age, lengthy remission can sometimes be achieved, even in the elderly. So there may be light at the end of the long tunnel.