Can lupus disappear?

[Jenn22M]

Hi! I was diagnosed with SLE in December 2000. I had positive dsDNA, ANA, high ESR, low C3/C4 complement levels, elevated liver enzymes, elevated serum globulin levels, protein in urine etc. along with recurring fevers, weight loss, swollen/painful joints, arthritis, Raynaud's, and features of Sjogrens. However, I only tested positive for dsDNA that one time with other positive ANA tests at later times. I have remained relatively symptom-free and have been on/off Plaquenil since 2001. Yesterday, I went for a follow-up appointment with my primary care doctor and she believes that I do not have lupus because I have no symptoms and my blood work is normal with exception of the slightly elevated liver enzymes and the presence of Raynaud's. I have had 3 rheumatologists in the past, including the original one that diagnosed me, say that lupus does not disappear but simply goes into remission. Should I believe them and hope that it does not come out of remission (last flare was 2 years ago - mild joint pain/swelling) or the new doctor saying that I don't have or possibly never had lupus? I am confused! It does run in my family as my father's brother and his daughter (my cousin) both had severely debilitating cases of lupus and both passed away from pneumonia complicated by lupus.

[Penguintaz]

Sadly it does not dissaper! It is quite common for people to have their ANA result vary between positive/ negative as I read it's actually a spectrum with a certain number of ANA being "positive".

I'm glad to hear that's your bloods look so healthy and you aren't suffering any symptoms but it's not gone I'm afraid. Remission can last a long time, even for the rest of your life. Just do your best and hopefully you will love a long life unaffected by another flare up X

[Paul_Howard Partner LUPUS UK]

Hi Jenn22M ,

Your rheumatologists are correct that lupus doesn't 'go away'. I think it is more likely that you have been experiencing periods of remission, rather than having been incorrectly diagnosed based on your past combination of blood test results and symptoms.

Some people with lupus are fortunate to experience prolonged periods of remission in which their symptoms are relatively mild or even not present. During this times when the lupus is inactive, it would not be unusual for blood test results to be closer to 'normal' levels.

I have heard of remission lasting for decades in some people and there are also a number of people who find that their disease can be less severe after the menopause. Hopefully you will not have further flares, but it is important to look out for any warning symptoms and go to your doctor if you do so that it can hopefully be nipped in the bud.

[Jenn22M in reply to Paul_Howard]

Hi Paul, Thank you for the reply! I tried telling this to my primary care physician who is an internal medicine resident. She is referring me to a new rheumatologist since my former one has left their department. Sadly, I hope that the lupus diagnosis was correct, otherwise, I have been mistakenly prescribed medication for nearly 18 years.

[Hidden in reply to Jenn22M]

I was initially diagnosed with RA about 7 years after being diagnosed with Hypothyroidism. After a period of 3 years I felt much doubt about this and felt I might have a Lupus so I sought a second opinion - with the support of my GP. I saw a very highly regarded professor of CTDs who studied my file and told me I certainly have very clear cut autoimmunity - but due to having no kidney involvement while being post menopausal - it couldn’t be Lupus - because my symptoms and signs weren’t remitting. He said if I’d had Lupus rather than RA, by now i would certainly be feeling the disease levelling off as it usually does post menopausally - unlike Sjögren’s and Raynaud’s which usually get worse with age. As it happens I later found that Sjögren’s is the main disease for me and I do have done early stage kidney involvement as part of it. After sending my new rheum some photos of my hands pre diagnosed she has reinstated my RA diagnosis now - which went missing from the list for a few years. So I believe these diseases can often take turns.

[Jenn22M in reply to Hidden]

Thanks for your reply! Two years after being diagnosed with systemic lupus, I had no menstrual periods and was diagnosed with premature ovarian failure. So, I went straight to post-menopausal, no menopause in between! After reading your reply, perhaps that is why my lupus symptoms decreased dramatically and are now rare or non-existent, with the exception of Raynaud's.

[SjogiBear]

I used to test positive to dsDNA, ANA, Ro and ACl - I had typical lupus symptoms as a young person with the flitting joint swelling and pain, facial and body rash, fevers, headaches and kidney involvement - I was on steroids for a few years and then it all settled down. I believed at the time it was gone - this remission lasted for almost 20 years with only the only odd thing happening until I hit the perimenopausal years when my health started to fall apart again -this time I no longer tested positive to dsDNA and I am now told it is Primary Sjogrens and I no longer have lupus. There does seem to be a close relationship between the two with age a primary factor in how the disease manifests itself. So sadly no, it doesn't just suddenly disappear

[Buffy14]

It's very confusing remission in lupus , my renal consultant says I am in remission from a renal point of view , he says I have chronic kidney disease but not lupus activity in my kidneys , he has based this on the fact that ibersartan which I was given for high blood pressure has reduced the protein leak in my kidneys to just a trace and that my dsdna has come down over the last 12 months from 83 to 39 . I don't think he should be saying that I am in remission as I still have all positive results , positive ANA positive RO , still have raised dsdna although at the moment it's not as high as it was it is still raised and the number goes up and down all the time , my kidney function is in the 40s . I still have joint pains , rash and extreme fatigue etc and he says I still have to take steroids and immunosuppressants , how is that remission ? It isn't it is what most doctors call a quiet phase when your disease is controlled by medication .

My rehematologist said that some people do go into a proper remission where their results can go negative and maybe then the medication can be stopped but I have been told I will certainly have to stay on steroids for life and probably immunosuppressant medication to because I am high risk of further damage to kidneys . There currently is no cure for lupus unfortunately .

[Lilylupy]

I have been on plaquenil since I was diagnosed at around 32, 33 years of age.. I am 50 now. I joke around a lot with my doctor over the blood work look I tell him I’m perfect no more meds for me.... he laughs and says oh your good because your taking your meds like you should! It doesn’t mean I don’t have flares, of course and now that I’m getting older they come with a vengeance.... but I get so spiraticly that I would rather have that than be miserable like I was..... it’s one of those things where you have to be thankful that your not worse or you didn’t care of symptoms you noticed to be abnormal. So if I have to take this and aspirin and other meds... than so be it. One day, maybe they will find cure! But grateful to my doctors who all rushed very fast in all the blood work ups years ago. ❤️