would you describe SLE as progressive ?

[hanb27]

My mum did some research for me and found somewhere that said after you've had SLE for 10 years you have reached your height of severity . I have only had it for 18 months, wondered what the long term sufferers think? Previously I thought it was not progressive just altered.

[madmum]

I have had lupus for 24 years and in that time I have gone in and out of remission, I have also had mild and severe flares. In the last 2 years I have had a lot of significant changes to my health and it is getting progressively worse. That could be due to me getting older (i'm 41) and taking longer to recover.

My Nan recently died from lupus related illness at the ripe old age of 86, she had been relatively stable for over 35 years, but her last 3 years she went through numerous major life threatening flares. I wish I could say that 10 years is the peak but unfortunately for me and my nan it did get worse, however, we both had a long time of relative good health, before the flares and symptoms got more severe.

[Purpletop]

It is a progressive disease - not only lupus attacks the body cells, it then interferes with the ability of those cells to recover fully, which means that each tine there is an attack the cells recover less and less. As time goes by there is less recovery and more damage, hence the progressive label.

[gazorpf]

There is no "height of severity" with lupus. Lupus is a remitting/flaring disease all the time. Lupus is different for each patient. I have had lupus for 49 years. The worst years were 1985 and 2003. I am 62 and doing very well. Take a careful look at the source of your information. If it is from a .org, .edu. or .gov the chances are better that the information is accurate. Anyone can say anything on the internet without any proof. Looking at the source helps you measure the accuracy of the information.

[gazorpf]

Lupus, well managed, is not necessarily progressive. First, some people have organ involvement and others do not. Second, some patients are compliant and others are not. Some patients respond to one medication others do not. Treatment involves a lot of trial and error. No one can say that lupus is progressive in all cases or not.

[dgleds]

Ive read same as what your Mum said...by 10 years you will know how your case will be...what it will effect most with you I guess...For me its mild, and its joints and muscles so far...I think I might of noticed it in 2009...I saw my ANA in 2009 anyways, but no one said nuthin then;( so far 5 years, I guess...

[Barnclown]

I'm 60. My infant onset lupus was diagnosed in the USA shortly after birth & again during childhood & when I was a teenager, but my mother & drs kept this diagnosis to themselves & explained my health probs as "normal" which puzzled me cause no one I knew had these probs!

I moved to the uk at 21. My medical records were left behind in the USA. So, all my life, until just over 3 years ago, my version of systemic lupus was progressing, while presumably relapsing & remitting, with hardly any systemic treatment...except when my symptoms became acute and I was treated as an isolated emergency by the nhs. Meanwhile my gps gave me prescription NSAIDs & analgesics which were ineffective but I was desperate. Other chronic problems were also treated with minimal effectiveness on repeat prescription, eg GI and ENT problems. Meanwhile, i put a lot of energy into conscientiously discovering by trial & error which complementary therapies & lifestyle management techniques helped minimise the chronic persistent symptoms all over my body.

But, even so, my lupus continued to progress....until my symptoms got so bad that finally in 2011 a brilliant lupus experienced gp finally diagnosed SLE & began treatment based on physical examination & medical history alone. At that point my mother said down the telephone line , " but dear, you've always had lupus!". You can imagine my reaction

So, as I understand it, my version of lupus could well be worse, and the progression greater, had I not lifestyle managed it so consistently, and had the nhs not dealt with the emergencies so efficiently. But I do wonder about all that. And, whatever, my debilitation is significant. Fortunately I can handle that....and it's a lot easier to accept my level of progressive deterioration now that daily hydroxy+myco+amitrip with occasional pred tapers are helping me feel better than I have since the 1970s

As you can tell from the length of this reply, SLE progression is a subject dear to me heart. Am v grateful to you for asking this question hanb27! You've got some vvvv good replies

Thanks xo

[Petrof in reply to Barnclown]

I have a very similar experience. I had health problems since early childhood and I overheard my mother talking to her older sister about their health problems behind my back. They did not know their diagnoses, but clearly were aware that something was going on with them and with me. Whenever I complained my mother played the problems down. She was diagnosed with lupus at the age of 58 (until then her problems were mild) and died also from a lupus related problem. I was diagnosed at the age of 47, although I knew my mother had lupus, it never occurred to me that I have it too and that it could explain my health problems. I was also told my lupus is mild but I do see and feel worsening of some symptoms.

However, I am wondering if not knowing was not better than knowing. I did not take anything for any problems until I was diagnosed. And I managed and my health did not stop me from doing anything - studying, work, travels, sport... Had I known, I may have been much more careful and might not have had so many great life experiences and achievements.

When diagnosed I got steroids and I was on them for 4 years, initially high dose and than maintenance 5 mg, until I insisted to stop taking them. Even then, they caused my osteopenia. Had I not taken them, my bones might be still strong.

So, although I was angry with my mother that she was not very understanding about my health complaints, I think that I am quite happy with that, because I think that it saved me from medication side effects and it allowed me to get on with my life.

[Barnclown in reply to Petrof]

Wow, petrof: so glad you responded: you're the first person I've found who has had an experience like mine!

And I totally agree with your comments: especially that it's vvvvv happy-making to have avoided some Rx side effects (although my years on ineffective NSAIDs etc have aggravated my osteopenia to the verge of osteoporosis & made my GI probs severe)....especially I'm glad to have avoided long term steroids - which my husband was on for decades due to crohns disease

And yes, not knowing has meant I didn't hesitate to live life as an adventure, plus I concentrated on learning A LOT about lifestyle management, which stands me in good stead even now I'm responding well to daily systemic treatment for lupus

At my SLE (re) diagnosis in 2011, I did feel startled and horrified by my mother's confession, but I was only angry with her in passing.....mainly I felt really glad she was alive to finally give me this info etc....and also I felt delighted that her news endorsed my rheumatologist's diagnosis. And I was relieved to find I wasn't just the lifelong hypochondriac everyone seemed to think I was

[Petrof in reply to Barnclown]

Thanks for your response.

[Chapter in reply to Petrof]

Petrof, might I ask what was happening/why did you get tested when you did. You said that you had managed your life without medications, what eventually made you look for treatment. 4 years on steroids is a long time.

[Petrof in reply to Chapter]

For years I had been having lower abdominal pains, unexplained (usually between the periods but gradually with no pattern with swollen face), I went to the A&E many times, but inconclusive. One junior doctor told me once it could be endometriosis. At one point, I was with BUPA and used it very well for having many tests done - all negative. A gastro told me it may be IBS, but I said no, why then do I always have raised ESR? He checked and ordered another blood test and then rang my home saying that it looks that I have Lupus. And then I said to him with an amazement, well my mother had lupus, still not really knowing what it is about. He referred me to a BUPA reumathologist, who said that my ANA are raised and therefore the Lupus is active and put me on a high dose of prednison and Hydroxychroloquin with an instruction to reduce is every 2 weeks while waiting for the apptmnt. to the Lupus unit in St Thomas' hosp. The consultant there insisted to continue on 5mg which I did, until I was moved to another consultant and asked him to get off the prednison. With the same doctor I am now trying to reduce my Hydroxychloroquin.

Admittedly, that abdominal pain did improve with the medication. But it also has improved without steroids once I reached the menopause. I still get it but it is not so severe. So i still don't know if it is endometriosis or not and if I should have laparoscopy done or not.

Since then I don't think I have ever had raised ANA again, so my doc checked several times that it indeed was raised before, in case it was not lupus. Without that I don't think I would have got SLE diagnoses.

Frankly, when I had raised ANA I did feel unwell but not much worse than any other times when I am not well, so I think that I could have improved even without the steroids as I do now. That is my theory anyway.

[Sallyk21]

I totally agree with gazorpf, I was diagnosed at 17 and I'm now 48, I've had bad and good times but wouldn't necessarily say it 'progresses'. In my case I was very ill around the time I was diagnosed, and I've had flares over the years but can honestly say they've not progressed. However, with lupus, like a lot of other illnesses you can't predict what may or may not happen.

[bevjane74]

I've had lupus flares from the age of 11 and was diagnosed with lupus at the age of 40 and the flares are getting worse and more painful but I wouldn't say after 10 years you know what you're going to be like cos that would mean I would be the same as I was at 21 and I'm definitely worse they've said now I'm on hydroxychloroquine that I won't get any worse but any damage that's been done won't mean I'll get any better I should hopefully remain the same

[hanb27]

well I am so grateful for this sight! everyone is so honest and gives great incite, I guess it really is different for everyone, who knows what the future holds as they say!

I off camping with the kids and aim to have a dam good time!!!

xxx