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741900 tn?1235160618

Is there such a thing as Remission?

Can a person with Lupus really go into remission? After 22 years of having SLE my doctor told me last week that I am in remission.  What does that mean? Will it flair up again? Has any of you been in a remission? What dosage of medication were you on when it happened?

I want to be happy and excited but I don’t want to be disappointed either. My dosage right now is 4mg prednisone, 400mg Plaquinel, 125mg Imuran.

Would love to hear some input. Thanks Nancy


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Avatar universal
Yes, you can go into remission.  I've been in remission since 1998. But before then I would have lapses of remission for 9 years every time I got sick.  I've had SLE Lupus since 1979.  I started taking Cellcept after I had a kidney transplant in May 2001.  I was told that this medication can help my lupus.
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No, they don't take you off of your medications.  They lower your medications while you are in remission.  I've been on Prednisone for 39 years.  My highest dose was 80mg and my lowest is 5mg which I'm taking right now.
484098 tn?1259527532
Yes, there is a remission for Lupus.  I just read somewhere that if you go three months with NO PAIN during that three months, you are considered in remission. I DON'T KNOW if they take you off medications during remission or not.  I work with a woman that has autoimmune deficiency syndrome (basically everything in her body is affected) and she is now in remission, is taking no meds whatsoever, and has no health issues any longer.    

Personally, I have been taking meds and been in pain since Oct. 1999, after getting the H. Pylori bug in my stomach.  That's when all my troubles began.  I truly think that bug screwed me up.  I just get more and more meds every time I visit the doctor and am down to 1% of the pain I had before, and it's RARE!  I had pain in my hands in the middle of the night last night, but that's all I've had for about 3 weeks.  I'm excited.  I will be marking a calendar for when there's pain, and hope for that magic sentence, "You are in REMISSION!"  

Good luck to all of you!  
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741900 tn?1235160618
Hi, In the 22 years I did have problems with my hips. I had to have them replaced. It was called avascular narcrosis of the hips. Lack of oxygen to the bone.  I had several operations during that time too. All related to Lupus.
Today I feel happier, not as tired. I actually have energy. Face has cleared. I actually feel human. Now, the only problem is my Fibromyalgia. It has a hold on me sometimes.
Everyone is different. I've been told I have this look, a so called healthy look. What ever that means.
I wish you all the best. And I know down the road you will be able to experience what I am going thru now. BUT... Remember, Remission is not permanent.

Hugs Nancy
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679575 tn?1245115450
wow 22 years on prednisone. That is a long time.  I think i was on it 4 months and i already had bone loss in my right hip.  I guess it doesn't make you crazy like it did to me, even on low doses i was like a crazy mad women.  I shouldn't have been let out of the house!!!  It is good to hear that someone is in remission it gives me hope that maybe one day it will happen to me.  So what does it feel like when you are in remission??
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741900 tn?1235160618
Hi, I have been on Prednisone for 22 years. Never been off it. I started on either 85mgs or 100mgs. Just can't remember. Soo long ago. Weighed 104 lbs before and within 2 months I was 179 lbs. plus. Size 4 to size 22/24. It has taken this long to get down to 4mgs. But still having problems with my weight. The Imuran, I have been on for about 8 years. They check me regularly.
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679575 tn?1245115450
How long have you been on prednisone for??  I am just curious.  My dr;s worked very hard to get me off of that as fast as they could to minimize the damage.  I feel like i am one of the few that have managed without it.  I am sure if i did take it i might have a lot less symptoms but that stuff made me crazy and really mean crazy. sweats, mood swings, anxiety weight gain.  I was a night mare on that stuff.  I am also on imuran.  I had a bit of trouble with it the first time i was on it.  It screwed up my blood and i ended up losing 40 pounds in less then a month and with my blood test results it was either the imuran or i had cancer so i had to go to a hemotologist  and go off imuran and get so many blood tests for so many months just to make sure it was the imuran and not cancer.  Thank god it was the imuran.  I started taking it again and went up in dosage slowly and so far so good.  which is good but i could really use to lose a few pounds  lol
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679575 tn?1245115450
I have heard of remission. I used to think it was a myth.  I go to a support group for people with lupus and someone there know someone who went into remission but so far i haven't and no one i know that has lupus has.  You are so lucky to be in remission I feel like I have been in one big flare up for 4 years with no end in sight.  I am not sure what being in remission really means.  I guess you actually feel like a normal human being for a change.  I also have no clue on how long it can last for.  In your case i hope a long time.  I do hope someone else will post an answer because it is something i would be interested in knowing more about.  Sorry I am not much help.
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