I went to see my Renal consultant yesterday and he said from a renal point of view I am in remission , this is because there is no longer protein in my urine . The protein leak has stopped because I was put on ibersartan something I am not happy about being on because of some side effects I have had but if it is stopped the leak of protein starts again so would he then say I'm not in remission from renal lupus ? I was diagnosed with lupus nephritis stage 3 following a kidney biopsy 15 years ago . I said well if I am in remission can I stop taking the Mycophenolate etc and he said no you need to keep taking it to remain in remission . I then went into ask numerous questions mode . He said since my Mycophenolate was increased in march my dsdna has come down from 83 to 39 so I said well if my dsdna goes down to normal levels which I believe is around 7 in someone who doesn't have lupus doesn't that mean I would be in total remission and could I not stop the medications then ? At that point he said for my next appointment he is going to arrange a double appointment with him and my rheumatologist together which I thought was weird . They both work in the specialist lupus clinic but usually I see them separately . I am still getting the symptoms and flares from the rhematology part of lupus , I have never ever been aware of any renal symptoms in 15 years of having lupus I was just told I had it . A few years back I had a good spell when I had barely any symptoms for a few months and my dsdna went down to 16 . I asked the renal consultant ( a different one ) at the time if it was remission and if I could stop taking steroids and he said no , he said it was just a quiet period not remission and I must keep taking the medication , my dsdna went back up into the 70,s soon after that . I am wondering do some doctors call the quiet spells in-between flares remission ? Or is there such a thing as total remission were there is no evidence of lupus in your blood and you can stop taking all these horrible medications which bring even more problems of their own for example osteoporosis which I now have after 15 years on steroids . I don't get it , I have heard of people saying they have been in remission for years so it must be possible but are they talking about complete remission without meds or just a very long quiet period . Any advice would be greatly appreciated especially from any of you who have been in remission as I want to ask as many questions as I can when I go for my double appointment , Thank-you .
Is there such a thing as total remission in lupus ? - LUPUS UK
Is there such a thing as total remission in lupus ?
Tell me if you here an answer of “yes”. I’ll volunteer to go into remission first
Hello Buddy......Interesting post. I have Sjogrens and MCTD and take Hydroxychloroquine,Mycophenolate and a small dose of Amitriptylene for the peripheral neuropathy. I have been feeling pretty rough this year and was given a blue badge because I could hardly walk.
Fast forward to a couple of weeks ago and I can walk without a stick and don't really need the blue badge at the moment. I actually feel well. I wondered if this was a remission but apparently because I'm on Mycophenolate it is just called a drug induced remission. It's really odd. I'm seeing my Rheumatologist at the beginning of February. I don't know what to expect next.
I hope you get some answers at your meeting. I expect others with Lupus will be able to help more than me. Good Luck !
Sorry that should be Buffy....spellcheck !
No problem , thanks for your reply
It's interesting what you have said about drug induced remission I am assuming that's what mine must be as the consultant said I still need to take the medication to keep it in remission , I don't feel well still getting flares in joints and the fatigue at the moment is really bad .
I haven't had a Lupus flare in nearly 30yrs and am in 'remission' However, I'm an SLE patient which has affected my kidneys and my Lupus markers are always checked regularly. The meds I take keep me in Lupus remission and at the same time keep my kidney transplant healthy. Without them I have no doubt the Lupus would return. Although I am in 'remission' I still have Lupus symptoms such as fatigue, joint pains etc. quite regularly. I truly believe the meds I take (one of which is Mycophenolate) keep the Lupus at bay so although you are never rid of the disease completely, take what is prescribed and hopefully you will stay fit and well. xx
If your lupus is brought under control by medications, it is drug induced remission. If you are stable for a while your doctor may try reducing your meds to see if you can remain in remission without them. DsDNA is one of several markers they check. Usually C3 and C4 are better indicators or lupus flare.
Then there is serological remission where your bloods look normal, and clinical remission, where your physical symptoms of lupus are minimal. I hope this helps.
Hi Buffy14 ,
Remission (clinical quiescence) isn't actually clinically defined and therefore may vary relatively between patients.
To be in remission means that the lupus has been calmed down sufficiently with the current medications so that most symptoms and problems come under control. Remission does not mean that the lupus is gone and therefore it is important that someone in remission continues to take their medication and see their doctor to ensure that it stays under good control.
If someone has been stable for a reasonable time then their consultant may try reducing the dose of their medication and even weaning them off some of it if they are able to. In many cases treatments like hydroxychloroquine will still be continued because they can help to reduce the risk of further flares or other complications like cardiovascular health problems.
Whilst doctors will often rely on blood test markers and patients' reports of symptoms to decide whether they are in remission, blood test results aren't always a reliable indicator unfortunately. Some people have high levels of anti-dsDNA antibodies that don't fluctuate with disease activity, meaning they could have high results regardless of whether they are experiencing symptoms or not.
In most cases, when people have lupus nephritis they will have no noticeable symptoms until the later stages. This is why testing the urine regularly is so important.
I would LOVE an answer to this. Since all this began, I have never felt remission even when my labs were good. I always just say I feel 30% like crap instead of 100%. I’m not even clear anymore about flares. I never feel well, just less bad sometimes. For those people who are symptom free whether through remission or a lack of flare, I really would like to know what that “feels” like.
How did the conferene between you, you're Rheumatologist & Nephrologist go ?
It wasn't actually a conference in the end , the double appointment that was arranged was 1pm with rhematologist in one room then 1.30pm with renal consultant in another room , both in the same clinic on the same day , was daft , the receptionist was very confused , I assumed when he said double appointment he meant both consultants together in one room or am I being daft ? . I asked my rhematologist about remission , he said in some patients the blood results change to negative and symptoms are minimal and in those patients they will sometimes try reducing medication or stopping it . I asked about reducing my medication as renal consultant said I am in remission , he said he thought it would be too risky and he said risky for you not us , he showed me my results on the screen and there was a red h at the side of each result and he said that meant I am high risk . He said they would discuss my case at their next meeting , the clinic I go to has 3 renal consultants and 1 rhematologist he said they would all have to agree to let me stop taking the meds . They didn't agree , the letter to gp said they would not be happy to reduce the immunosuppressant drugs as a flare could cause further kidney damage or organ failure , he said she has gfr in the 40,s and positive ANA , positive RO , raised dsdna , low C3 . Renal consultant didn't have a lot to say as I was late seeing him because I was talking to the rhematologist for a while . I have seen my renal consultant again since the so called double appointment and I said if my results are all positive how can I be in remission ? he said we treat the symptoms not the antibodies . I said a previous renal consultant had said to me it's not remission it's what we call a quiescent phase . To that he replied well I will call it a quiescent phase if you prefer , what it's called wasn't the point I was trying to make I was saying the other renal consultant said it is not remission . My renal consultant said it was my rhematologist who said no to reducing medication . He said if they did it I would have to understand the risks and could end up as bad as I was in the beginning .
My renal results haven't been too bad lately apart from high urea 12.8 and gfr was 46 when bloods checked the day of double appointment .
How are you doing ? I hope you are keeping well .
I’ve heard the phrase relapsing/remitting for cases when a person reports all symptoms go away for a period of time. Given there is no cure for Lupus nor I don’t think they can say total remission, if by that you mean you no longer have it. As far as I know, except for DISLE, once you have it you have it.
Yes there is no cure , and even if you are not having a flare like you've said you still feel crap , my doctor's say I am in remission yet I still have kidney disease and always will but my renal consultant now says it is chronic kidney disease not lupus , I have joint pains which my rheumatologist says is due to old age ( 57 at the time ) , I have excessive tiredness and both consultants said I should be checked for sleep apnea , I said I've been told for 18 years that the lupus causes tiredness and kidney disease causes tiredness , the rheumatologist discharged me after I said that . It's a joke that now they are trying to say my symptoms are caused by other things even though my bloods are still positive for lupus .I now have MGUS and one of the symptoms you can get with that is kidney damage if it progresses to multiple myeloma or amyloidosis and my hematologist was confused that my renal consultant says my kidney impairment is not lupus it's chronic kidney disease , he wrote to him saying if there is any doubt about what has caused her kidney disease then we need to know , I don't know what his reply was .
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