No longer have lupus

Hi in2009 I had the lupus rash,really badface,ears,arms,chest,feet and high BP, bloods not good.joint pain fast heart rate and really hot.anyway got diagnosed really quickly put on tablets.stared to feel better quite quickly.had a few little flares the two years.since then I've been really quite well with the tablets.then last year I went for my regular check up and was told I have no signs of lupus and to stop all tablets and I don't need to go to hospital anymore.wanted to if this is normal and has anyone had this I'm confused thanks for reading any advice welcome c

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  • I was speaking to someone last month who was similar to you. She was taken off meds and had a flare, so now they have told her she will stay on 1 tablet a day for life. She has been well since, no flares. Hope it goes good for you

  • 20% of systemic lupus cases go into remission. I read that epstein barr virus has been linked. If your viral count is high it acts as an immune inhbitor and causes you to need less drugs. Symptoms of EBV infection are chronic lymph node soreness and sore throat. Downside is you can end up with chronic fatigue syndrome.

  • Good news, right? πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

    In my limited experience, what you're describing is not exactly commonplace, but, hey: many of us on here aren't considered "normal" or common place examples

    Hope you do sustain this apparent remission πŸ€πŸ€πŸ€πŸ€πŸ€

  • I know 6 months ago blood tests showed no signs of lupus for me too....first time in years. Unfortunately I have to stay on meds as I have auto immune hepatitis as well...and Sjogrens. Wishing that would go into remission too.

    Hope it lasts for you. X

  • Here in Canada my doctor says I stay on Plaquenil for life. Because Lupus is a disease of flares and remissions she says I will be symptom free at times and maybe find myself in remission for a number of years...however she says I would then be seen only once or twice a year. At no point is the Lupus 'gone' and I will always be a Lupus patient. She says that's important because if you slip 'out' of the system, getting back in before symptoms are serious can be tough. Remission is great; it's the goal, but It's not the cure and so I think you should still have meds and an annual check up.

  • I have a similar same situation with my RA - I took methotrexate and Hydroxichloraquine for a few years but was unable to tolerate either so I came off them. My symptoms of RA haven't come back and it's been about 20 months now although I still get fluctuating inflammatory markers, fatigue and unwellness and neuropathic issues with dry eyes. But I'm told these aren't treatable apart from topically.

    I have a diagnosis of Raynauds and Sicca too and am Hypothyroid.

    Unfortunately I had another bad allergic reaction, this time to Azathioprine, last year so I'm off all these drugs now and RA has never returned. I'm told RA is always for life, like Lupus, but then elsewhere I read that 15% of people remit permanently so it's very confusing. I've rediagnosed myself now with a neurological type of Sjogren's. Decided to give up on doctors for the time being!

    Stay well.

  • Hi Fragile,

    It's great news that you're doing well. It is possible for your lupus to go into remission.This doesn't mean that it's gone, only that it's inactive. If you feel anything coming on or feel worse then go back to them and say so.

    If you're unhappy with this though and feel that this treatment plan isn't right then you are entitled to a second opinion on the NHS so do go back and say so.


  • Don't worry about what you can't fix. In this case it's all good news so don't try to figure it out just et on with life and be happy. Your probably one of the lucky ones. I'd say a. you were mis-diagnosed or just lucky to have the right doctor and meds.

    Good luck and remember the less stress you have in your life the better off you'll be. So happy for you.Β 

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