Remission for lupus

[kimc]

To all the lupus out there, who had suffer or surviving from lupus for some long period of time. Is any of you going to remission and survive from lupus? I like to know...

[bevjane74]

Hi Kim I'm pretty sure remission just means that you're going through a period when you're not suffering any of the symptoms of lupus - from what I know a person with lupus has periods of flares where they suffer from the symptoms then periods of time when they feel Ok and this is what they call remission - from what I've been told there's no cure from lupus but with a good team of medical experts around you they can help to control the symptoms and flares

[IrishLupie]

bevjane74 is right, you can be in remission for years (and I have been) but it can come back. In my case I went into remission from Juvenile Dermato Myositis (another autoimmune condition) and was med free for 2 years but then something happened and I developed Lupus (SLE) and haven't been able to be med free for the past 5 years. As for surviving I think many people on here would say it is entirely possible to have a great day to day life with Lupus abd do many of the things you once enjoyed whilst compromising on other things. (I gave up cross country athletics, basketball and rock climbing for jogging and archery)

[kimc in reply to IrishLupie]

Hi Irish, so.. the idea of remission only when we're feeling better, it doesn't mean it goes away completely. Last week, I felt a little better and I was telling myself: hey, I feel I can do what I'd been doing before....go to the beach got some drinks, I got home that night and it flared up, I had to call my doctor...It seems like, we always have to control it, don't make it worsen. I'm very sorry to hear you were such an active athletics and now it must be hard for you just to be inside. I hope you can find something you can enjoy indoor as much as you were enjoy outdoor Irish. Thanks for your support and God bless.

[Maya23]

I enjoyed 6 months of remission during the winter months, but the lupus has become active again in the last 3 months (since the sun got stronger). When I say 'remission' I had very few symptoms (just the odd niggle) and a lot more energy than I've had for years. Since the lupus started flaring again, I'm having a whole lot of symptoms and the fatigue is noticeably a lot worse. I'm on no medication, due to the adverse reactions I get to all of the ones I've tried so far (I'm a delicate flower!) but I take anti-inflammatory herbs every day. I also follow a strictly gluten free diet which has definitely helped.

So just wanted to comment on this post to encourage all who read it that lupus can and does go into remission. And I hope I will again this winter!

[kimc in reply to Maya23]

Hi Dryad, I was diagnosed skin lupus a year ago, right beginning last spring and you're right. I was treated, but it flared on this spring again. But, as bevjane and we're know now we only can control it, unless we find cure in the future which we're all hope. I still try to find the reason why I got it and frightening back with my immune system.

I do like your idea of taking anti-inflammatory herbs, because they have less side affects... I may have to do that. I'm so happy to find this support group, because I can find someone likes you to encourage me and others the days we're feeling down. Thanks and God bless.

[foxglove in reply to Maya23]

I wonder if you would be kind enough to let me know what anti-inflammatory herbs you use? Thanks

[rayna in reply to Maya23]

Hi Dryad which herbs do you use?

[Maya23 in reply to rayna]

I use yarrow, calendula, camomile, as a tea every morning and through the day if necessary. I also use vervain to calm my nervous system. If I get joint pain I add feverfew to my tea. Sometimes if necessary I go to my local herbalist (at Neals Yard) and get a herbal tincture made up by a professional herbalist, tailor made for me.

I also take a teas spoonful of organic turmeric powder with home made goat milk kefir (I shake them together in a jam jar and get a fizzy spicy drink which I quite like) 1-2 times a day. Turmeric contains Curcumin which is the active anti-inflammatory ingredient, which has done well in clinical trials (and is supposed to be as effective as NSAIDS).