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Remission Really? PLEASE HELP?

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Posted 3/7/2014 7:35 PM (GMT 0)
Hello To the Lupus Loop in the know! Yeah You Guys!

I just read something SUPER EXCITING in another post. (Do I mention the post and or contributor??? Secondly, I seriously didn't want this getting lost in another's subject...ok( I am new around here too.)

REMISSION!!! What / how do you get to remission?

I am so tired all the time, I don't even have the energy to give this amazing subject the attention it deserves. I am so sick . Also just so sick of being sick and tired. Yes, I am having a very bad day.It is a daily effort to maintain positivity and focused on being well. I am a solution orientated person. Evil Lupus...

I have had Lupus a loooooong time, I know it flares that can even be deadly. I have experienced it come and go over the years. Never have I noticed anything I was doing for this to happen. I was thrilled and delighted to be feeling better.

What are you doing to regain your health or even just to feel better?

God Bless you all!
Melaine <3

Post Edited (GabbyChick) : 3/7/2014 12:39:17 PM (GMT-7)

Posted 3/7/2014 8:14 PM (GMT 0)
Remission is just luck of the draw, like everything else about Lupus! I have been med-free and fairly symptom-free for over 2 years. I consider my Lupus to be "quiet", it is only recently that some Drs use the word remission, it's a bleed-over of a cancer phrase that I don't really think is accurate for Lupus.

By that I mean sometimes I have a joint swelling, a fuzzy brain, overwhelming exhaustion, or night sweats. But that's one at a time every 2-3 weeks - down in the "noise" as far as I'm concerned. And it's NOT good enough to resume my former life. (Business owner, PhD student, Marathon Runner - none of which I do now. Focus/concentration/learning still less than par, couldn't work a 40-hr week.)

All I did was follow my Drs orders. Prednisone, Plaquenil, Xanax, Trazodone to start with - better sleep, less anxiety, control inflammation & Lupus advancement. Then of the regular 3 (Imuran, Cellcept, MTX) I took Imuran - nothing changed. Then Cellcept for about 18 months gave me my brain back. (And a few less-significant meds to treat other symptoms as they came & went.)

(At worst point I couldn't drive, had measurable cognitive dysfunction, couldn't follow a 20-min tv show, felt like battery acid being pouring into burning joints, all the fun stuff.)

Now, I get deep restorative sleep (Trazodone), eat regular balanced meals, get regular exercise, and have better spirits (Wellbutrin, which I took before Lupus). My focus is always on taking care of myself as best I can any given day. Marching orders include: protein for breakfast, if sun shining & >60 degrees then spend time in sun, minimum 10-minute walk whether I feel like it or not, that sort of thing.

There was no single magic bullet in anything I did. Just tried what the Drs suggested, and tried to take it easy and didn't panic about the future - just did one day at a time. I think in many ways that's all any of us can do, ill or not. And I had a *very good Dr* right off the bat -- very very lucky in that area!

Peace.
Posted 3/7/2014 8:17 PM (GMT 0)
Hello!

I think you read that in mine! :) Unfortunately I guess I am flaring now and have been for several months but I had been feeling okay and not having any symptoms that raised concern for a little over a year... It's difficult to know since I was just given the official "You definitely have SLE" diagnosis yesterday, so I never really paid any mind to specific things thinking "Oh, this is just my lupus" .... I have had Ulcerative Colitis since I was 15 (dx in 1999) and got so sick that I consider my "flares" to be really severe symptoms with bleeding, and my remissions to be times when I'm feeling basically normal... But I've NEVER escaped the fatigue, the headaches, the occasional achy joints... So maybe I've never really been in lupus remission. It's so hard to know!!!
I've really just been racking my brain the past few days, thinking on all those times in the past when doctors have dismissed by pain as "a weird flu" or whatever and thinking "I wonder if this was always lupus?!"


I guess I would say to feel better and go in "remission" or a quiet period (is there such thing as remission in lupus? I'm not even sure now that i've said it LOL) would just be to take any necessary vitamins and medications, stay active, eat well, and sleep!! At least, these things seemed to be helping me before this most recent bout.

Good luck!
Posted 3/7/2014 10:44 PM (GMT 0)
I have had periods of what I call remission throughout the course of existing with Lupus, especially after lengthy medication regimes. I had a five month "quiet" period after Cell Cept and a few times after bumpy roads with Prednisone. And another after my brief experience with Benlysta. Even though I could not continue with Benlysta, it did keep the disease activity quiet for a while. Now that I am undergoing a Prednisone taper, disease activity is ramping up. I will see how things for a week or two. May have to resort on the higher dose of Prednisone for a while. I really miss the "quiet" times.

Laura
Posted 3/12/2014 6:24 PM (GMT 0)
Some lupers have times of flare and remission, others never go into remission, and some go into permanent remission. If doctors knew how to achieve remission there would be a lot of happy patients but they don't. Until more is understood about the disease and a treatment is developed other than just suppressing the immune system remission is relatively uncommon. I am lucky and have been in remission for 8+ years and off all meds for 3+ years.

Bill
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