I have had SLE for 26years I went for my hospital appointment last week and was told that my SLE had disappeared is this possible?

[stephenpaulann]

I also have Antiphospholipid Syndrome .I have had 2 strokes the dr I saw wants me to stop my steroids. I am very confused.

[Twdibwd Volunteer]

No disrespect intended stephenpaulann, but if I got that sort of good news I'd be wanting a second opinion. I'd want to make absolutely sure what was meant by 'disappeared'. Remission (always possible) or cured? Is your APS being prescribed for? I'm very interested in what feedback you get from our Lupies and hopefully you will get a comment from St Thomas's Lupus Clinicians.

[Franziska]

Mhm, I had a doctor telling me this before when my lupus was in "remission" for about 8 years. Two years later my lupus broke out with a vengeance. As far as I know Lupus doesn't just disappear but it can go "to sleep". Of course, I'm no expert, I'm just another person with Lupus I would get a second and third opinion if I was you. Not having to take steroids can only be good in my opinion, but you shouldn't just stop, you need to wean yourself off it.

[uniqueflo]

i read somewhere that lupus can sometimes disappear in your 60 s.dont know how true that is but sounds plausible as hormones play a big part in flares.i also have antiphospholipid syndrome,and was told at my last rheumy visit that won't ever come off steroids now as my body wouldn't produce it itself now.been on steroids 4 years plus now,though weaned down from 50mg daily to 2.5mg daily.i would be v happy for you if it has in fact disappeared,but be v weary about changing your meds drastically.good luck.x

[Hidden]

Currently lupus cannot be cured. So I think they meant you're in remission which is quite common. People can go into remission for years and years, but lupus may rear it's ugly head again or it may not. Mostly it needs to be triggered somehow, so things such as stress, hormones or a virus may bring it out of remission. As women get older and go through the menopause they have less hormones and they are also responsible for lupus flares, so yes later in life you may find you go into remission or have less flares. To reiterate lupus (currently) will always be there it's sometimes just dormant and hopefully it will remain that way for you. If you want to check about the APS side of things contact the Hughes Syndrome and they will advise - hughes-syndrome.org.

[Heather69]

I was diagnosed with Cerebral Lupus in 1987 and since 1998 my lupus tests have been negative.

I enjoy the change.

However i was also diagnosed with APS in 1987 and it is more than a handful most of the time.

The "lack of lupus" has meant my medication is not as intense as it once was.

Did the doctor say that it was because of a change in your blood test results? Did they have solid proof ?

[JanBad]

I attended a meeting today where a Lupus specialist gave a presentation. They stated that lupus can go away and the antibodies can go away. This interested me greatly as I have always believed that this is a condition I would have for life. At the end of the presentation they asked for questions, so I asked for clarification of the statement.

The response was they had had one patient, a young lady who had been symptom free and negative blood results for five years.

I know what I think of that answer. What do other people think?

[Twdibwd Volunteer in reply to JanBad]

Only one patient?

[Hidden in reply to JanBad]

This is very strange. I can only think that the specialist was referring to the fact that lupus can go into long term remission. Sadly even then it can come back. We've had people go for ten years with no problems only to have lupus rear its ugly head again. I think when people make these statements they need to be asked for clarification as people can easily misunderstand what they meant, so good for you!

[JanBad]

Yes that is what they said. !!!!!!

[Twdibwd Volunteer in reply to JanBad]

I wonder if you're thinking what I'm thinking? Something like 'one cookie does not make a party?' Or perhaps a mis-diagnosis at the beginning? Well it's good news for that ONE patient anyway.