Can lupus go from remitting to a slow progressive pattern?

Can i ask if the long term lupies out there have noticed a change in pattern and severity of symptoms over the years?Although i was only diagnosed 12 months ago ,i have sufferd for 18yrs ,initially it was 12 months of active disease then it was a remitting pattern for around 15yrs ,always with symptoms in between but managable.However now i just seem to be in a consistant progressive state,with a worsening of symptoms and mini flares very week or so .Can i get some feedback please ,?and when your not in a flare do you still have symptoms as im never free of them ever and am i expecting too much ?thankyou ,brave;)

14 Replies

  • Hi Brave

    Sorry to hear that you are having a hard time. Lupus seems to have it's own mind doesn't it? And so many factors can effects it from stress to infection. Also, for me the season has a big effect on my illness. I'm always better in spring & autumn, but feel lousy in winter & summer. I can understand why summer effects me because I am very light sensitive. But the opposite seems to be true in winter due to the lack of light. The only thing I can put it down to is low vit D levels. I really don't know what season we are in at the moment with all this snow!

    In the15 years since my illness started, it was been very much up & down with severity of symptoms. Initially it was like the worst flu imaginable for weeks at a time, but with 'almost' normal periods in between. Gradually though the fatigue has increased, & I can look back & see that my activity tolerance has lowered over the past few years.

    Lupus is very much a fluctuating illness. So things can change rapidly & quickly, for better or worse. But I would say if your symptoms do seem to be in a prolonged downward pattern, speak to your rheumy.

    Yes, when I'm not in what I think of as a flare, I still have many symptoms, although more manageable. For me a flare can come on at any time if I'm not careful to pace myself, keep out of the sun, get upset etc. Oh the joys of lupus!

    I hope you can get some help & feel better soon. X

  • Thankyou roobarb,whats worrying me is my lypmh glands ;(the doc or conultant dont seem botherd at all and say its autoimmune related ???and i have blogged a few times concerning issue but dont seem to find its much of a problem with other lupies?my neck glands are always tender ,they get worse with stress ,exercise (laugh whats that i ask?)alcohol ,sun!igenerally feel lousy ,fluey ,stiff ,tendons hideous,tummy troubles ,glands and a very shingles like sensation particularly left side ,im over it ,most days i push on but some days im bedridden and then other times its full blown flare from nowhere x

  • I get similar problems with my glands too. I have always noticed they feel tender & swollen when I'm in a flare. I have come across references to it in various Lupus books & websites, being just another one of our myriad of symptoms. I'll see if I can find any thing that might help to reassure you.

    Take care & try not to worry. X

  • thankyou roobarb

  • Hi Brave

    I did a quick search & found swollen glands listed as a lupus symptom on Lupus UK web site. The Lupus Book by Daniel J Wallace was a bit more illuminating. He says 'when the disease is active, the increased number of inflammatory cells & immune complexes cause lymph glands to enlarge...Half of all lupus patients have enlarged nodes ... during the course of their disease.'

    If this is occurring along with other other worsening symptoms it would be worth contacting your rheumy nurse help line if you have one. Or your GP otherwise.

    Take care & very best wishes. X

  • Seems like at the moment i have every kinda symptom ending in 'itis!' Gastritis,tendonitis,cystitis,lymphenditis,inflamation galore ;(((

  • How horrible for you! Get some advice honey, sounds like you really need it right now. X

  • I have had lupus for a long time, some of the symptoms go back to my teenage years. when I was about 26 I had a very bad flare, however at the time I thought I just had very very bad flue. it took me about a year to get back to normal although I never felt quite the same after that. I lived a normal life, worked full time and was very active. when I was 33 I had the worse flare ever and it was then that I knew there was something seriously wrong with me and was diagnosed with lupus one year later. My symptoms were extreme, I was so fatigued I could not get out of bed. I had joint pain severe breathlessness, constant panic attacks and agrophobia and many other symptoms. after trying to continue working I had to stop because it caused constant flares of my illness. Now 17 years since my diagnosis I have improved some what, however I still struggle with severe fatigue, lung issues and breathlessness, joints, frequent flares. My symptoms are with me all the time, some days are worse then others, but there is no real let up where my symptoms are concerned. I spent many years trying to fight the disease, often to my deriment. I have learnt over the years to listen to my body and to pace myself and to take each day as it comes. x

  • Thankyou ,can i ask if you suffer with lymphgland involvement?My story sounds similar to yours in that i had issues as a late teenager and at 21 a huge flare and never returned to my previous health state ever again ,with other flares and always symptoms in between ,anxiety has been a big issue for me but ive never taken any medication ,unfortunatley lupus affects my nervous system which i hate,so most medications dissagree with me and make me feel worse,i fight lupus all the time and certainly havent accepted it ,its scares me as i never know how i feel from one day to the next ,;((

  • I do get swollen lymph glands, I had inlarged glands in my chest area last year and had a biopsy just to make sure it was not cancer, but it was due to lupus I also often have swollen glands at the back of my neck. I have to take medication otherwise my symptoms get very bad especailly my fatigue, lung issue, anxiety and agrophobia. I am also very sensitive to medication, not just medication, but pratically to everything, so I have to be very careful what I take, which can be very frustrating, but that is lupus. Like you I fought lupus when I was diagonsed, but that didnt work in my favour, I just become worse from the anxiety and exhausted from the constant fighting. In the end I learnt to accept I had this disease and to try to work with it, to take the medicatons that help and didn't cause too much adverse effect on my system. It is a very scary place to be when you are diagonsed with this disease, you feel you have no control over your body, your life and you are fearful of what the future holds, I get that. All I can say from my experience is that I went through the different stages of grief and eventually arrived at the other side to a place of acceptance. it took a long time, but I did get there and I am sure in time you will arrive at that place too. Just try not to be too hard on yourself. I didn't have this forum to talk to other lupus sufferers when I became ill, it would have made such a difference, so make full use of it because everyone on this forum is eger to help and very supportive.

    I am happy to answer any other questions you may have.x

  • thankyou x

  • thankyou

  • Hi Brave, thought l would let you know, the symptoms you describe are very similar to mine, l have sle, but I do suffer with painful glands In my neck especially when l am in a flare. I have found that if l don't push myself to hard, and take life a day at a time, and try hard to stay calm then the swollen glands don't seem as bad. Do hope this helps you. Lucymay x

  • Thankyou lucy may

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