How long have you lived with the illness? Does the condition, with management gHowet easier as you get older?, (women - post menopause) - is this in remission?
I will go first!
I think that my Sjorgren's Syndrome, (and possibly Lupus SLE - but not 100% sure on this auto immune disorder), commenced when I first went onto the contraceptive pill at 16yrs old. The affects were almost immediate! After a yr or so of being on the combined pill - my GP changed this to the mini pill, which seemed to help. ****My I add that at this time I had not been diagnosed with any of the auto immune disorders that I currently have!***
Then after reading a report in the news about a young lady who passed away with blood clots in Merseyside, ( I was 21yrs old at the time), because of the same mini pill that I was currently taking - I stopped taking this medication with my GP's assistance.
Not long after stopping the contraceptive pill my immune disorders started to take affect.
Over a period of 2 to 5 yrs - I got Glandular Fever - which knocked me off my feet for months, then Chicken Pox, Viral Meningitis and believe it or not German Measles twice. Even though I had had the GCB and Rubella at school aged 11yrs. At 25yrs I had to have the above vaccines again.
I then started to suffer with fevers, shakes and high temperatures, muscle aches and pains, severe fatigue, (but was also a full time student and working part time - so put all the stress/tiredness etc down to this). At this time I was also diagnosed with IBS. The only medical treatment that I received was Fibrogel - which made the IBS worse for me and Mebeverine for the IBS.
At 27yrs old I fell pregnant with my first baby - unfortunately, my son, Robert, was still born at 7 and half months. As you can imagine mine and my partners life could never be the same again. Complete and utter devastation does not come into it. I was diagnosed with Protein S Deficiency, (a blood clotting disorder) and Anti Phospholipid Anti Bodies.
Fortunately, with expert medical treatment, (aren't Dr's fantastic!), went onto have my daughter - with twice daily Fragmin Injections and 75mg per day aspirin.
Not long after having my daughter, (she was 10 weeks old), I was admitted into hospital with severe pelvic pain, shakes, high temperature and fevers - I had an internal infection after a c-section. But my blood markers were also off the scale - so much that two Rheum Consultants came to see me as they suspected I also had Lupus!
I was monitored for 2 and half years, (with no treatment or medications), and was finally informed that I had scored 3 out of 4 on the Lupus test, ( I am going back 10 yrs ago now), and did not have Lupus. As I also suffered from severe dry eyes, dry nose and mouth, Re active arthritis, muscular aches and pains, from time to time skin rashes and fatigue - I was diagnosed with Sjorgren's Syndrome at 33yrs.
However, i noticed that over the years my symptoms and flare up's were more frequent, lasting longer, taking longer to get over. I would question my previous Rheum Dr again, HAVE I GOT LUPUS - which he would reply NO!
My I add that I was told to take NSAIDS, regular exercise and that was it?
From Nov 2009 to June 2010 I was so poorly and was undergoing a series of tests at the hospital. My GP thought that I was pre menopausal.
In June 2010 my SS symptoms were so severe, ( and it was also a blessing that I acquired a new Rhemu Consultant), that I was prescribed Planquenil, but had to cease taking this after 4 months as my body couldn't tolerate it.
After picking up either another viral or bacterial infection in Aug 2010 - my health deteriorated so much that I was admitted into hospital in Oct to Dec in ITC. I have been very lucky - I have since been diagnosed with Lupus SLE and now in reciept of medication - AT LAST! Finally being diagnosed at 39yrs! Medications - MMF 500mg 2 x per day, Steroid recently reduced to 10mg per day, Rampiril 2.5mg 2 x per day, (since the attack have slight heart abnormality), 5mg Folic Acid every day and Calcichew Tablet every day.
I have been quite candid, BUT, you DO NOT have to be if you don't want to.
Thanks in advance for any comments made!
Kind regards, Lulabelle
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Lulabelle
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I can see so many similarities in your timeline, to my own.
german measles x3, mumps, chicken pox, glandular fever (scarletina at the same time) when I was 15.
I was diagnosed in Oct last year.
My GP asked me, are you surprised? I replied, no, I think I've had it for some time, he was in full agreement.
I'd been previously being signed off of work on a few occasions in my 20's for exhaustion, kidney problems at an even younger age. 15 years of vasculitis the list goes on far too many symptoms and red flags to mention, but it wasn't until that lightbulb is switched, all the pieces of the jigsaw now start to make sense.
To be honest, it makes me a little cross that rather than finding out why my bloods used to come back bad, eg: low platelets, they often blamed my other condition, which is primary lymphoedema.
It seemed that nothing ever was really picked up on, nothing was ever all put together as a whole picture...if that makes sense.
I'm now 40...I have SLE and on predisolone, azathrioprine, amitriptyline (pain relief) and calcichew D3 twice a day, yum yum!!
I guess they got there at last, but as we know, its just the start of a new bumpy road! x
Reading these Blogs make me want to cry as so many of you suffer so much.
My Lupus has been mild and i have been though quite a lot.
Docs thinks i have Lupus long before my diagnosis in 1990
i was 50 then,I cannot put my hand on my heart that it gets better with age. I think we get more tolerant with age and accept a higher pain level or is it just living with Lupus!!
All the bestxx
Hi there everyone. I've only just been diagnosed at age 54. I asked my doc how long he thought this had been going on and he reckons that the first set of symptoms in my med history which are likely to have been caused by the SLE occurred when I was in my mid teens, so forty years ago. It's been a long old wait.
Be well everyone & remember 'If you're still breathing there's more right with you than wrong'.
Hiya, first wanted to say thanks for sharing your experience, am sorry that you have been through so much, and for posing such an interesting question.
I think that I had some vague symptoms as a teenager, growing pains, migraines, fainting spells, but couldn't say they were definately connected.
I have two children, and had no problems until after the birth of my second child, I had a quite bad mastitus infection and pretty much didn't get better. With hindsight, and my docs seem to agree the combination of triggers, hormonal, infection and predisposition (there are some autoimmune diseases in my family that I didn't know about then) set things off. I was 24 then, some 17 ish years ago!
My doctor at the time diagnised post natal depression, I think discounting many symptoms and seeing a relatively young mum of two, PND was an easy diagnosis option. I was not diagnosed with lupus until about 10 years ago, (So when my children were 9 and 7 or thereabouts) The time before lupus diagnosis was trully hideous, at one point being threatened with sectioning for ECT because I wasn't getting 'better' quickly enough.
I was diagnosed after my joints were so swollen that I couldn't use my hands at all, this was the first time anyone ran any blood tests, and I was diagnosed quite quickly after that, on the basis of blood tests, symptoms and history, and subsequently with CNS (brain involvement)
I think that it's hard to say whether treatment has improved the condition, I am fairly sure some treatments have, and I did have a very good couple of years with rituximab treatment. There have been many ups and downs.
As I understand things menopause can make things settle down, but can unsettle things initially, which is of interest to me as after two lots of cyclo treatment I should apparently be hurtling into menopause any moment now!
Will be really interested to read other peoples answers to this. x
I was diognised at age 21 but suffered joint pains since puberty (13yrs) then my consultant thought i had juvenile rheumatoid athritis. At age 20 I was under a diferent consultant and after a series of tests and x-rays it was discovered that i had SLE instead.
I'm 32 now and looking at my hands one would think i have athritis but under x-ray the joint are perfectly normal. I was told it's a problem with the tendon's. I'm currently on Prednisolone 5mg daily, Azothiaprine 100mg daily, folic acid, iron tablets. I have 2 children and i must admit that i've never felt better while i was pregnant. I have also had less flare ups while on the coil. Leaves me wondering could treatment lie in a hommone?
Hello with your diagnosis of Lupus, have you been suggested to be tested for APS Hughes Syndrome, migraines, lost pregnancies and blood clots, often goes with Lupus. I had very marked signs in teenage years, ie percarditis , ulcers in the mouth and huge swelling of glands... but only just passed a test aged 46. There is a Hughes Site on this platform. I work on there as an admin lady, contact me if you want any further informatiojn! Mx
MaryF - yes please provide me with further information on APS Hughes Syndrome! I would find information on this very interesting. My Rheum Consultant has advised that due to all my immune disorders i am quite a complicated case. I do not even know if they have concided the above condition. I would like to read up on this and query with him at my next appointment in March. Thanks in advance!
I had growing pains in my teenage yearsand loads of weird stomach aches, muscle sprains, sore throats, measle, mumps, skin reaction to creams/soaps and because i have a connective tissue disease they mostly blamed that.
Ive seen some truly horrible doctors one said even if you end up in a wheelchair go home and get on with it........ which i and my husband thankfully would not except so we kept lists of the wierd and wonderfull things which happened over too many years.
I have also meet the most wonderful doctors like Dr G hughes with a blood test saying i didnt have lupus said 5%of lupus patients dont have the test to prove it but i had enough markers so i came under the lupus umbrella that was 2yrs ago.
Im 41 now and i think im lucky that i try and enjoy everyday because you dont know what can happen, i have friends who are still waiting for that rainy day and i want to shout what are you waiting for go for it what can you lose least you have tried...
Hi Lulabelle, thanks for posing the interesting question and for being so frank about your own health - sorry you've had such a bad deal over the years.
I had glandular fever when I was fourteen and my health went downhill from there with constant fatigue, muscle pain, sore throats, recurrent tonsilitis, allergies and digestive problems. From teens to late twenties I was constantly prescribed anti-biotics.
My upper arm and shoulder muscles have seized up completely at times over the years and I've been in great pain. I always felt guilty for having ill health, and especially for being tired so often. I thought it was just me, and didn't know there could be a reason for it.
I developed asthma when I was forty. I'm now 54, menopausal and have been diagnosed with CTD, which my doctor thinks is SLE - the diagnosis began when I developed Raynauds last year with a digital ulcer, and then had a positive ANA test. Joint problems are becoming worse, but I'm determined to keep on top of this!
And I have to say that despite all this, I've had a great life so far! It's just good to write all this down and know people are going to understand.
Where to start....I suffered "white finger" and toes when I was a child and into my teens, in fact when I think about for most of my life. My mother put it down to poor circulation and used to bathe my feet in warm water. I dreaded the winter months and wellingtons. I got out of breath easily, memories of school and PE come flooding back, but it was never diagnosed or treated. I was often out of sorts but just learned to live with it. My mother worked and hated taking time off...I also suffered a bad scald that had me in hospital for about 3 months when I was 8 years old, I needed 2 skin grafts. It was in the 1950 when more and more women were going out to work and the rate of household burns and scalds in children rose sharply. My Lupus doctor told me that. I asked if the shock of that might have started Lupus but she couldnt say for sure, there was no way of knowing but she didnt rule it out...Had a normal puberty but I had severe stomach cramps every month. I know some women suffer these but mine were unbearable, they stopped after my son was born in 1968. Suffered an overactive thyroid in my 30s and took prescription meds for several months, it eventually settled down without surgery. My morther had the same problem and my daughter has recently recovered from an overactive thyroid.
Had a bad menopause in my 50s that was helped with HRT and then really bad night sweats started in my late 50s aftrr HRT finished...I went to see my GP thinking it was still the menopause, and she told me hormone levels were stable and had been for quite some time...I was getting tired easily, my legs particularly would ache when walking home from my daughters and I was constantly breathless. My GP told me it was "probably rheumatoid arthritis" and prescribed diclofenac. In 2005 I collapsed and was taken by ambulance to hospital....a camera down my throat showed internal bleeding and an ulcer, caused by the diclofenac. They did a laparotomy almost straight away as I was in and out of consciousness. Spent 2 weeks in hospital, recovered well. Went back to my GP and saw a locum who asked if I'd seen anyone re the suspected rheumatoid theory, I said no. Within 2 weeks I was in rheumtaology out-patients for blood tests, never in my life had so many....Went back for results and was told I had mild SLE. I was 59, nearly 60.
Been taking hydroxychloroquine ever since, 2 tabs a day and they have worked for me. The cold finger is much better, I dont feel the cold like I used to. I've also been diagnosed with asthma and now have the blue and brown inhaler, use the brown Clenil one every day, twice a day so I can now get upstairs with out gasping for breath. I also suffered severe chest pains every time I took a breath a few years ago and spent one night in hospital. Looking back and knowing more about the symptoms of Lupus I now think I had some sort of inflammation round my lungs, very frightening. I take ramapril as well for hypertension.
This is the most I have ever talked about these things to anyone..I hope I havent overdone it and sent you all to sleep...
Ladies and Gentleman - I want to Thank you all so much for your responses and candid replies.
From most of the posts provided my opinion is that all us Lupies seem to share similarities with regards to the early onset ie the signs and symptoms and at one time all other we have suffered with really strong strains of viral infections. Could it be that the viruses that have 'triggered' dormant auto immune disorders to become active? and in doing so affected the correct formation of proteins in the bodies natural white body cells - which we know causes our body to attack itself? and secondly, it would seem that 'hormones' seem to also determine when lupus flares are likely to occur i.e puberty, pregnancy and the menopause. With regards to the men - again could be hormonal re puberty and the possibility of hormonal changes/decline as they get older.
I know from reading about this condition and research that is currently taking place not only in this country, but Canada and the USA - that they are also interested in the 'protein's' in the cells! However, as yet stem cell search doesn't seem to have made much difference with this auto immune condition. But it is still at it's early stages.
Are any of you aware of any research that is in progress where they are looking into the hormone theory?
As I have explained in my first post I also have Protein S Deficiency which is a clotting disorder - again proteins that are made in the cells???
When my daughter was 18mnths old I was informed by her hospital Dr - (she was born premature because of my condition), that once she commences puberty and her periods commence, she will have to be referred back to the hospital to be checked for the above condition\?
One thing for sure this Lupus condition poses more questions than answers lol! Thanks, Lulabelle x
Hi, I was diagnosed at the age of 49yrs. I think that I had it for many years. I had terrible sore joints but thought it was to do with the job I did(I was a nurse). I had 3 miscarriages in my twentys. The doc thinks that it eventually became fullblown when I reached the menopause. I take numerous medications including antimalarials. Good to read all these interesting answers.x.
Hii..i have diagnosed with lupus when i was 25.But i would say that it all started very early when i was in high school.My initial only symptom was hairloss and rashes.Unfortunately i had the habit of walking under sun for atleast half an hour.i so much suspect that hormone estrogen has a greater role to play in lupus than other factors.excess production of estradiol can even cause cancer in some people.
I think i have lived with my since I was a teenager probably around 15/16 years because at this period I used be very ill ,lots of swelling face ,unexplained bruising.to compound it I used to get malaria so often.you can guess where I come from.I was only diagnosed in my 30's when I came over to UK.So roughly I had lived with it for 15yrs before diagnosis in 2004
Makes you wonder if we had glandular fever or was it lupus. I took collapsed at 25 with glandular fever was unwell for about 6 months. Following other episodes of bad "flu eventually in my 40's diagnosed with cfs and fibro and three years ago finally got under a ruhemy ? Lupus despite have family members with the condition now under the label of connective tissue
I had Epstein Barr blood tests when a teenager to validate that I did actually have glandular fever and the virus was still in my body several years after I was first diagnosed. An alternative therapist I went to a couple of years ago thought the virus was still causing the health problems I have now.
Definitely needs to be more research into this virus and the problems it can cause through life along with hormonal changes.
I thik that I have probably had lupus since age 14 -15. I was finally diagnosed 6 years ago at the age of 53 after very bad reaction to insect bites while in Turkey. However I can remember at guide camp, about when I was 14 I was like meals on wheels for the midges, with 98 bites on just 1leg. When doing nurse training was often in sick bay with very swollen glands but nothing ever showed up on throat swabs. However I have antibody negative lupus so goodness knows how long I have had it, but have been quite unwell for the past 6years
I had scarletina, and glandular fever in my late teens, but have had severe allargic reactions all my life, having to use epipens, and causing me to give up nursing
Hello all thanks for sharing your stories. I had glandular fever, measles and chicken pox as a teenager but other than some vague and fleeting joint pains through my 20's was well. I took the pill from age 18 to 28 and had my first child at 29. All well until my second pregnancy 2 years later! Had horrendous joint pains half way through pregnancy and though my daughter was born healthy and well in 1993, the placenta at delivery was 'dead' in places due to clots! Over the next 4 months my joints and tendons went berserk. Got to see a rheumatologist straight away and was diagnosed with SLE and anti-phospholipid syndrome. Miscarried 2 years later despite aspirin.
Since diagnosis in 1993 I managed fairly well with hydroxychloroquine NSAIs and aspirin for nearly 21 years. I have had some nasty flares during this time with episodes of pericarditis, pleuritis and lupus nephritis. Developed raynauds and asthma too. Symptoms always worse the week before a period so seems like there was a hormonal link.
I am now menopausal and have just had a big flare this year. Developed gastric ulceration after 21 years of NSAIs and had to stop my meds to treat the ulcers. Have just started methotrexate and folic acid, alongside the hydroxychloroquine, and back on aspirin 150mg but these are enteric coated and taken with omeprazole to protect my stomach. Hoping this most recent flare will now settle down.
I just got diagnosed last year at 56 and a half....(2013), but I saw a test result for a positive ANA back in 2009 (by coincidence) tested for different reason, and not for lupus. However, no gp said nothing about that test result...I may have been this way for a while.,.but menopause sent things wacky...already had a slow wacky thyroid at 41yrs old..
Plus same time kids were leaving home, parents dying etc etc etc...stress to the max .
I have brain fog..sure hope Ive not answered this before...
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I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with .. 
Negative ANA - but lots of lupus symptoms and rash?
Diagnosis of lupus but feel completely fobbed off by my rheumy!!
