do your SLE symptoms get progressively worse?

Hi all,

i have been diagnosed with lupus (SLE) a month ago, and I am still getting a lot of tests done to check my organs. My symptoms are joint pain, migraines extreme itching and burning dry eyes and mouth and hair loss and many others.

but i wanted to know whether anyone has experienced their symptoms gradually getting worse over time as i am still really worried and scared

thanks xx

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  • Hi MsTMP

    I have Fibromyalgia and my ANA test has just come back positive so I am waiting further results of tests for Sjorgens and Lupus, I do have these symptoms but more so in my muscles I get pain in bones of hand and foot and tinitus at times as well, so will have to wait and see what comes back. I hope your symptoms won't get any wors and can be helped with meds. Best wishes

    Carol

  • Hello MsTMP

    I remember feeling really worried & scared about my symptoms progressing even worse when I first went into the diagnosis & treatment process 6 years ago. But this wonderful forum has helped a lot to calm my anxiety

    The great thing is that you are now in this diagnosis & treatment process alongside your doctors. So many of us struggle for years, even decades, with symptoms progressing, before we finally get into this process.

    This diagnosis & treatment process is a collaboration...together you & your doctors will get to know your individual version of lupus & any other associated overlapping immune dysfunction & connective tissue disorders affecting you...together you'll see how your signs, symptoms & lab results respond to treatments. Meanwhile, we're here for you, as is the whole of Lupus UK

    As time passes, the progression of your condition can be slowed down by the treatments that prove to help you most. Discovering which treatments these are may take time...at first this can seem a bit like a trial & error process...but the process does pay off

    Basically, you're now into personalised treatment. And your jobs are to monitor your multisystem signs & symptoms as your meds take effect (which need not be complicated: just keep a little log of the occurrence, persistence, severity of your stuff...and take pics of anything visual) and meanwhile your other job is to keep your gp & lupus clinic informed of how you're responding to treatment + of anything causing you concern

    So, take heart: you're on the right road....your condition can & will improve

    I hope something in there helps

    Take care

    🍀🍀🍀🍀 coco

  • This gives me hope, as I, too, worry that my condition will deteriorate, even with proper medical care. Thank you for writing this.

  • Hi MsTMP,

    Joint/muscle aches and pains as well as migraines and hair loss are recognised symptoms of lupus. To find out more about lupus and the symptoms you can download or request a free information pack at lupusuk.org.uk/request-info...

    Around a third of lupus patients have some sort of eye related matter such as ‘dry eyes’. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

    With regards to your prognosis over time; it is important to bear in mind that lupus presents differently in everybody and the experiences of others here will not necessarily reflect your own. In some cases, people with lupus may experience a deterioration over time and have further symptoms, but in some other cases, people may experience periods of remission where their lupus is well controlled and they feel relatively better.

    Wishing you the best of luck, let us know how you get on.

  • MsTMP hello. I think is only natural to feel anxiety or fear in face of the unknown, just don't let it win ;)

    Lupus comes in all shapes and sizes, I can have a bad week and suddenly I feel normal. I'm learning to expect the unexpected, enjoy the good days and run to the Dr if something goes wrong. welcome!

    Sam

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