Are more cases of Lupus being found in older women now because it is starting later in life or was just missed for a long time?

[Chapter]

Purpletop, had such a good question yesterday about residual symptoms, one I had been wanting to ask. So I will ask another one. Lupus is usually considered a young woman's disease. When my first Rheumi suggested that I may have Lupus at 57 years old, my GP said unlikely at my age, a friend (doctor) said highly unlikely, I was to old. Well, apparently they were wrong and the Rheumi was right. My question is how many of us, male or female, were diagnosed later in life? Did it come from out of the blue or maybe we had it all the time?

[tallytutu]

I have recently been diagnosed at 57. I realise that I have had various symptoms for three or four years but they appeared unrelated as I had never heard of sle. It wasn't until I was really unwell, which I realise now was a severe flare,That I done anything about it. But even being admitted to hospital due to a seizure it still wasn't diagnosed. Eventually my gp who has been great done blood tests and my Ana was raised,which to me ment nothing at the time. I was sent to the rheumy who said I had sle and sent me on my way with a script for hydroxy and a steriod jab in my backside! Thank goodness for all of you on this site, it's been so helpful and informative. So I don't think I had it 4yrs ago but does it lay dormant?

[marypw]

Yes, I was diagnosed at 56. I was lucky to have a good GP who sent me for the right blood tests; I was completely shocked at the diagnosis. I'd thought all my symptoms were down to age, menopause, poor posture, lack of exercise etc. But as she said, age gets the blame incorrectly for many issues. I'd had physio for every kind of problem (stiff neck, thumb tendonitis, groin strain, sore knee etc) for a number of years, plus odd 48-hour episodes of feeling like I had flu, 'cold sores' but had never connected all these symptoms together. So I suspect it was rumbling around for 20 years. It's interesting, because all the books say that lupus burns out after the menopause, but I think for many of us, the menopause acts as the final straw!

[Purpletop]

It might be a mixture of the following:

- people who have had it for a long time undetected because the very odd symptom here and there but that due to some combination of factors (e.g. increased stress, menopause, pregnancy, viral infection, etc) made the full blown lupus to come to the fore - that suggests that this category of people are middle aged and over

- people who have had no symptoms at all until late onset of fully formed lupus - again, a category of middle age or over

- young people who have symptoms from early age

If we go back to the fact that lupus seems to have a genetic cause, it seems obvious that if lupus sufferers have a particular combination of those genes then lupus exists within us from the moment we are born but only certain triggers make it become fully active.

I also understand that there are current research initiatives that are looking into identifying whether the particular gene combination involved in lupus can tell us how critical the lupus is going to be, when and by what means it will be triggered (see Alliance for Lupus Research list of research initiatives for 2013). That information will help prevent the active illness by catching it early on.

Anyway, a long response. A shorter one from me - I was diagnosed at 47 but had symptoms on and off for 2 years prior but not before. I feel responsible for triggering the lupus I suffer from today but how would I have known?

[mstr in reply to Purpletop]

Hi....like you Purpletop I too feel responsible for triggering it....but I was healthy before so also how could we know. My own two adult daughters have been told how how important it is to look after your body through not overworking, eating healthy and work/life balance. But it is what it is....no point looking backwards as I dont think it helps.

[Purpletop in reply to mstr]

I know it isn't helping, you're right. The rational part of me knows that but sometimes I feel so bereft for the person I used to be. Still, as you say, no point going there, onwards and upwards only :).

[mstr in reply to Purpletop]

Though I say it I look back too so you're definitely not alone in your thinking. I just have to give myself a talking to......too regularly for my liking sometimes. Then again too a lot of people work hard hard and maybe have some of the other factors that can contribute to lupus too but they never get lupus so I guess we can't beat ourselves up too much. As sad as it sounds the upside is more time with my grandchild, and also some time to stand and stare more. Today the squirrel in my garden was eating all the bird food and hanging upside down from the bird feeders....... This intrigued me for ages but before I would have been rushing off to work and it would have been dark when I returned. Plus my mind would have been hoarding all the tasks for the next day. I guess it says it all. I too have sad moments (usually daily at some point) but interspersed with happy moments too because it helps me to cope. I am interested to hear how you get on with the rheumy and thanks for your question which has got us all thinking.x

[Purpletop in reply to mstr]

Rushing out of the door to go do something I loved - wonderful, even if that meant coming back late at night wondering how am I going to have enough energy to do something for dinner. Still, life moves on. I smiled reading about the giving yourself a talking to, I do that too.

I've posted a separate update on my rheumatologist appointment, under the same heading but with 'Update' at the end.

Sleep tight.

[saranne]

I had an immune system 'event' age 42, swollen all over but no def blood test answers. swelling went down but I was very tired slept when ever I could in the afternoon and swelling and pain would flare up. went on for years. Eventually told fibromyalgia. Drs always did all the blood tests, were very good at that, even tho no answers. Age 48 ulcerative colitis flared up. Then calmed but...5 years ago age 54 lost a lot of weight colitis awful, migranes, ulcers, raynolds, dry eyes and joint pain...had blood tests didn't bother going in for results but this time was called in to be told I was referred to Rheumy at hospital, by then all movement was very painful and that night worst ever, I couldn't push the duvet off me!..anyway it was lupus. So although the lead up to diagnosis involved more immune problems than the previous decade, had it been there all the time, not showing in blood tests? I do know that the fatigue I felt all those years was far from normal. So...another oldie with a definite

diagnosis!

[dgleds]

Me too...I'll be 57 very soon...just got diagnosed this year in June. Rhumey said its possible u have a genetic thing hiding out waiting for the right moment...then mega stress/hormone shifts/and the sun??? (the sun baffles me, but ok)...My gran had Rhumetoid arthritis very bad, but he said the genetic thing is like 5 percent...then he also mentioned a virus too possibly.(I did lose my hearing briefly)..I guess they are still learning .about Lupus.

...

[Plumbaline]

My story is pretty much the same, diagnosed at 58 - thanks to a new Doctor I had the right tests and was sent to see a great Rheumy. I was lucky. Unfortunately the doctor left shortly after. Am trying to get continuity and see the same GP each time but it is very difficult to get an appointment with any at the surgery!! My 85 year old Mother has just been diagnosed with Polymialgia, she has been ill since September, but obviously I have been quite worried about her as she never complains unless she's really bad.

Still, good luck to all of us in the future.

[esky]

Hi all

I was diagnosed at the age of 33 (34 now). But i had varying symptoms for roughly 7 years. My consultant thinks i had it for at least 4 years before diagnosis. I think that it is missed alot and not diagnosed properly. I dont think it is related to age - just poorly diagnosed. I have found with alot of my lupie friends that auto immune conditions in their families plays a major factor. But because it is such a complex illness - its anyones guess i suppose.

Lupie hugs

esky xxx

[mstr]

My symptoms started two years ago at the age of 48. Until then I was very healthy. I think it was a combination of menopause (hormones), genetics (autoimmune in the family), stress though at the time I didn't think this but was working long hours as a social worker and family difficulties), and sunshine (having a holiday home in Cyprus). Good question as I kept reading it was a younger womens problem but this does not seem to the the case. x

[mstr]

Oh I forgot prior to the symptoms starting couple of months before I had a virus. So was it always there and it was just triggered....certainly I had the full deck of cards!

[Melinda]

I was diagnosed with Lupus at 49. Exactly a year after I started to get joint pains. I was quite lucky in so far as I got a quick diagnosis. Only because they knew my family history.

As my late sister had Lupus and my mother had RA, I knew it had to be one or the other. I also have a crossover problem with RA. I'm pretty sure mine was triggered by the menopause. My sister on the other hand, had probably had it for a very long time. She had aches and pains for years, and had tests for everything.

[Chapter]

I have always thought I was pretty healthy although have had more issues than any one of my 7 sisters. When I was 15, I was having regular episodes of fatigue and nausea a couple if times a week - usually after exertion - and I would lay on the couch until it went away. My Mom was starting to get concerned so after several months of this, took me to doctor. Doctor said I had a kidney infection and put me in hospital but now I question how I could have had infection for that long and not been ill everyday? I have had that feeling off and on over the years and always recognized it but never felt need to go to doctor. Anyway, in hospital I found out I was allergic to penicillin. When I was 18 I had a benign lump removed from my breast. Since then I have always had UTI's, been hospitalized for 2 serious kidney infections, pneumonia, hysterectomy where advanced endometriosis caused complications and required longer stay and a lot of mysteries illness's that did not have explanation, and rashes that were guessed to be allergies. I have thought that over 40 years that was to be expected and probably normal, you are busy raising a family and don't have time to worry about a bad day here and there.

Almost three years ago I went to a spa and had a facial. Since it was my first facial I went for the full treatment, part of which was having a lamp shining on your face close up. Three days later I was in my first full flare. When I told my sisters I had been diagnosed with Lupus, although surprised it was lupus, they were all in agreement that "something has always been wrong with you". So, I think it is there, just waiting for something to push it into the limelight, and the lamp did it. Take care everyone!

[mstr in reply to Chapter]

Thank you for this....I find it so helpful to hear how things happened for other people too and it makes us feel less isolated.

[watercolour]

I have been recently diagnosed at 59!!! I have been ill for years starting before and in 2000 when I had a bad reaction to the sun. I had negative bloods tests and was told it was nothing but I got progressively worse with fatigue - fevers, chills, muscle weakness, headaches - joint pain etc., They then wrongly diagnosed ME which meant to no treatment for the awful flares I was having. It was a complete nightmare when I was not being believed! 2 years ago was so ill - still the tests were negative until this summer when the vasculitus rash came up and I was very ill after going into the sun. My ANA became positive!Sadly the Lupus has progressed to being severe... and only if they had diagnosed it earlier I would not be in the state I am in now... I now have a superb Rheumy and GP now who have taken me seriously and are treating me - I still have the trauma of going through the flares and not being helped, being so isolated and unsupported. So I think us older ones have probably had the Lupus since birth. I think there is still so much more research and understanding that needs to be addressed as the symptoms are very erratic. We know not from one day to the other how we are going to be either? So I do believe that the diagnosis does come in later life - I send my best wishes to you and thank you for placing the post... Take care, Kind regards, Watercolour

[Maureenpearl]

I was diagnosed 2006 at aged 54 but I have been ill from my thirties and felt at the time that the doctors thought that I was malingering and I was beginning to think that I was an hypochondriac. I had three children at the time one baby and one toddler when I started to have a lot of chest pains, fainting and lethargy, I even had the classic rash which my doctor said was the herpes simplex virus (the same virus which causes cold sores).

I could not look after my children as I was always tired and just wanted to sleep. I did have lots of tests and every test would be normal. Eventually a private doctor told me I have ME and I should know my limitations and don't push myself. This gave me permission to just rest and not feel guilty. I then went into remission for a few years until I went back to work in 2004 and that's when it all came back with a vengeance.

My lungs are now damaged by the lupus and I have ambulatory oxygen which helps me to be able to get on with life by going out and doing normal things.

Looking back at all my symptoms I do believe I have had lupus since a child. The sun has always affected me and my fingers always goes blue in the winter, any infection going I always catch almost immediately.

Love to all

[Chapter]

Thank you for the replies, as always on here, I feel understood and not so alone.

[Cann]

A lot of my symptoms started at 49 after a hysterectomy and drugs that should not have been prescribed for me with penicillin allergy for an infection, which wasn't, but in fact pieces of internal dressing pack mesh that stuck to my insides for six weeks after the dressing was removed though no-one knew, so I was prescribed so many antibiotics.

I realise I was sensitive to many things before that, but I suspect it was due to a build-up of onslaught on my immune system being generally a very sensitive person.

Now since the above episode, it's like being in prison. I can't eat out because I know exactly what sets off a bad reaction and restaurant foods can have so many hidden ingredients especially the salt that I can't take. I eat no more than 3 different foods at once and that is usually at night when I can go to sleep if feeling rough. I eat food separately to stave off a flare, but struggling at the moment with the cold bugs about. I can take no drugs and even using something for my dry lips sets off problems for me.

I do my best to live a sensible lifestyle with adequate rest/including meditations and self-healing which I learnt, appropriate exercise, wholefood organic diet when I can get it and keep positive using affirmations and in touch with friends that understand, i.e. the lupus group, but so many other people have health problems nowadays, that they may not fully understand, but do not judge and ridicule, which was awful when my symptoms first started after the surgery and drugs.

We all seem to have different symptoms, but we are certainly never alone in our suffering.

Take care all of you.

[Petrof]

I was diagnosed at the age of 47 (now 55) but am sure I have had it at least from my early childhood. I have a distinctive memory of going for a walk with my parents who took me out of the pushchair, it was a hot sunny day and I felt just so tired that I could not walk, felt so short of breath. I must have been around 3-4. A trigger? Maybe stress - my parents marriage difficulties? my father's heave smoking in our presence?

[Heatheric]

well, just to add to the above - I was diagnosed with lupus in October 2011 at the age of 57 following my legs flaring up with an angry purple rash while on holiday in Turkey. The doctor there took bloods and advised me to visit my physician when I got home - he suspected lupus. My GP didn't think so but did take blood and then referred me. I wasn't totally surprised as my dad had lupus - he died at the age of 54 back in 1980 - he had severe symptoms of rheumatoid arthritis, heart and lung involvement and kidney failure and at the time the main treatment was steroids. What actually killed him was the bleeding stomach ulcer from the steroids and his lungs and heart not being strong enough to cope with an operation. So I've had symptoms, very very slowly getting worse (but nothing major like many of you) but in the last year before being diagnosed I had thrush in my throat, an 'unusual' vaginal infection (my GPs description!) and increasing tiredness - no reserves of energy. I'm now on hydroxychloroquine and VitD and calcium and that seems to keep me stable. Strangely both my brothers have been diagnosed with rheumatoid arthritis since my diagnosis (aged 63 and 61), with the younger one also having suspected crohns disease and he had severe colitis when he was in his 20's. Easy to see it all in retrospect but I guess the main thing is that when symptoms begin to interfere with your lifestyle then a diagnosis and appropriate medication needs to be put in place. much love to all xx

[lizzidrippin]

Hi All, late with my addition

but I'm 55 and it's not me I worry about but my daughters and their offspring....like you I look back...ex athlete for GB, mixed hockey player and chef, with teaching and behavioural professional back ground, rider, swimmer and walker... when I was a child I always had problems with my joints but you just got on with things. Had hysterectomy at 34 and a couple of incidents with kidney stones, asthma, but when I was younger it was 'a weak chest' bronchitis and chest infections through out my life until asthma diagnosis.....is it the same with Lupus?....always been 'a sensitive person' re lumps and bumps, excema, rashes etc severe fatigue...diagnosed with ctd and oesteo and lupus....immune system shot!...both daughters have lupus symptoms both very different.....I have recognised it but their GPs poo poo the idea...sorry instinct and experience is telling me different....I worry...

that they have professionals who aren't aware.....that they will endure years of pain and anxiety.... that they will be told it's all in their head.......

A great big thank you to people on this site, you've kept me sane over the past couple of years.....xxxx

[netty44]

I was diagnosed with lupus at 68 and fibromyalgia at 60 but I think I have had various symptoms since I was young, it's just that they got worse and I had a full blood test which showed lupus. I had my second cortisone injection in the bum last week and am feeling really good with more energy and little pain and stiffness. You tend to forget what it's like to feel how you used to be. The last one lasted about 6 weeks so I'm hoping this one will be the same, or longer.

[Slowmo]

Another one here, diagnosed aged 42, following loss of both my parents within 20 months of each other. I'd had 'glandular fever' some 5 years prior (although it was not confirmed in blood tests - it emulated glandular fever).

I'm 45 now and was 'medically retired' this year following long term illness.

I try not to dwell on how long I may have had this illness as I don't want to make tenuous links, but really even before the glan fever I'd had pleurisy (many times), pneumonia and from my mid to late 30's seemed to become weaker.

Like purpletop I long for my past, my career and doing a job I loved, working with people I loved and lived a fast and fun life, it takes some time to come to terms with being slow, and appreciating the squirrels in the garden, (which I do) but find it difficult - I'd love to be the woman I used to be -running at full speed and enjoying every moment.

But hey, I kick myself up the backside too (usually daily) as I have to remind myself to be grateful that things aren't as bad as they could be.

So, in answer, I think I'd had SLE for quite some time before being diagnosed at aged 42 following real trauma and tragedy in my life.

Great discussion topic.

[Cjk333]

I'm 74. Just diagnosed with Lupus. But It began 10 Years ago, little changes, then skin changes... Diagnosed as psoriasis about 6 yrs ago. Rash and sunburn, hair loss brought Lupus diag. Ironically skin reaction started with new eye glasses. Slowly healed. Last year New glasses kick started it again, so much worse. Sun kills me. I see rhuem in Oct. So, hopefully I will get some assist.

Cjk333

[Chapter in reply to Cjk333]

Hi Cjk333

Was wondering how your appointment went in October, if your rhuemie had anything to say about sunglasses. I know that all the questions we ask ourselves to remember to ask rhuemie are often lost when we are actually at appointment, but how did it go other than the glasses? I hadn't worn sunglasses very much when I was younger (62 now) because I wear glasses. One summer I bought an expensive pair of sunglasses because I looked like a movie start in them, well that is what my daughters told me anyway 😎. I didn't wear them very much because I couldn't see, so the next time I had to get new glasses I took my movie star sunglasses and had prescription lenses put in them. I loved them, made driving so much better and just being outside. After reading your post I was thinking that I often get a flare after or during sunny holidays when I wear my glasses way more than usual. I wonder if the glasses make it worse than going without, was it only when you got new glasses or maybe when you wore them more? I know I had lots of different rashes before I was diagnosed but not ones that are so hard on my eyes as they have been in the last 6 years, most of my flares start with my eyes.

On another subject, I went to see a Dermatologist today (my doctors have been trying to get me in to one for years and I finally agreed, not that it was any use because I am fine right now). She asked about a bad episode of hives that I had in the Spring, and looked at all my pictures of my rash pictures of flares (I always take a picture to show new doctors - saves a lot of talking and they have no doubts when they see pics). She commented that every Lupus patient is different but we all seem to have our own repeat flares. Maybe sunglasses make us braver and we expose ourselves more to the sun or the glare that we would normally turn away from, we don't. Or is it the actual lense that is causing the problem?

Just a thought, I should have asked the Dermatologist, right!

Hope you are well,

Chapter