Is my Lupus Gone?

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coreya
New Member


Date Joined Dec 2011
Total Posts : 7
   Posted 12/7/2011 11:49 PM (GMT -6)   
Six years ago I was diagnosed with SLE Lupus. I had pleurisy, arthritis, skin issues, I mean I think I had every conceivable aliment affecting my body you could think of. I was prescribed 200mg Plaquenil daily which I continue to take. Here it is six years later and for the past 18 months I feel perfect normal. absolutely no pain and no issues with my organs or skin. 18 months ago (June 2010) when I took my ANA test it returned positive with a Titer of 1:320. Then December 2010 it was positive again at 1:2,560. Six months ago in June it was negative and just yesterday negative again. So what's the deal. Anyone have any thoughts on this. Could I have something other than Lupus? I am confused but happy that I feel so good.

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 12/8/2011 8:56 AM (GMT -6)   
According to my Drs, Lupus can go "quiet" or "inactive" but is never gone. (And they do not use the word remission with Lupus.)

I have similarly negative ANA's (where mine used to be positive) and my other bloodwork is also good. I continue to take Plaquenil and Feldene, and have some symptoms which continue (and act up if I get stressed, don't sleep, or eat poorly).

Most people say if they try to come off of the Plaquenil their lupus becomes active again. For me, I still consider myself to have Lupus, and I will be staying on the Plaquenil to ensure I don't start in with the flaring again.

It sounds like you are in similar circumstances -- just keep on the Plaquenil and enjoy feeling good!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 610
   Posted 12/8/2011 11:06 AM (GMT -6)   
Agree with Lynnwood. Lupus will only go inactive, but will never be gone. It stays with us for life. Mine is at the stage of inactive, too, and my ANA is negative, but it does not mean my lupus is healed.

coreya
New Member


Date Joined Dec 2011
Total Posts : 7
   Posted 12/9/2011 1:40 AM (GMT -6)   
Thank you all. Makes sense what you say. Appreciate the response.

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 12/11/2011 4:38 PM (GMT -6)   
I don't totally agree.  Although relatively rare there have been cases of lupus and other Ai diseases that have gone into permanent remission...the immune system normalized somehow.  Or the patient passed away before a flare.  There is no way of knowing if someone with no treatments and no symptoms is in temporary or permanent remission.  You always have to be sensitive to any new symptoms that occur and seek treatment again.
 
Mine is now 6 years into remission but I have only been off all meds for 6 months and my fingers are crossed.  No symptoms of either lupus or polymyositis so far.  Rather than worry I continue to make the best of each and every day but my doctor's numbers are on "speed dial" just in case.
 
Bill

coreya
New Member


Date Joined Dec 2011
Total Posts : 7
   Posted 12/11/2011 11:28 PM (GMT -6)   
Bill, wow you even went off your meds. That's a big move. Hope it works out. even as great as I am feeling I think I will continue to take my Plaquenil. It takes a long time to get into the system and start working so if I stop it I could be asking for trouble. I tend to agree with Lynwood that is doesn't go away it just goes into remission and could flare up at anytime. For me it seems mental stress is my enemy. I live in the Philippines which is an exasperating place to live at times and becomes very stressful for me. When that happens I get bouts of double vision. Lasts up to 3 minutes and then goes away. I have to stop letting myself get bothered by silly things I can't change anyway.Other than this I feel perfect but I won't stop my Plaquenil. I wish you best of success. BTW, what meds did you stop taking???

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 12/12/2011 8:50 AM (GMT -6)   
I did not have symptoms for 6 years, no flares.  Was on prednisone and imuran.  If I had symptoms I would not have stopped taking meds.  Anyone with symptoms should be on something to control their immune system so don't interpret my stopping as a foolish move.  My docs and I debated for 3 years about stopping and since I had a severe case of lupus and an extreme one of polymyositis stopping meds was a big move.  But after 6 years it seemed like I should try it.  First went off imuran in 2010 and then pred in July 2011.
 
The Phiippines is a familiar place to me since I had a business in Manila in the 70s and 80s and spent a lot of time there.  Loved the country but there was so much poverty in the cities and the political system was (and I assume still is) so corrupt.
 
Bill

tamayaya
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/1/2012 8:07 PM (GMT -6)   
I tested positive for Lupus Anticoagulant a few years ago and had multiple Lupus symptoms. I received no treatment for Lupus at all. I've had flare ups seemingly constantly until my Dr. decided to test me again last week. Now I've tested positive for Lupus. This time I'll receive treatments due to my ongoing symptoms.
Can anyone tell me what to expect, or do, when I see the Dr. next? I've been reading up on Lupus but don't know the standards for a new diagnosis.

Tammy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/1/2012 8:23 PM (GMT -6)   
I'm new to Lupus too. I was dignosed this past Feburary. Since I was diagnosed I've seen the Rhuemy three times, had bloodwork two of those visits, and started on plaquenil.

Mostly visits consist of questions and some poking of the muscles and joints.

The doctor will decide what medicines you will need to help your symptoms.
Joy

tamayaya
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/1/2012 8:48 PM (GMT -6)   
wink   Thank you Joy.  I appreciate what to expect next.  I just want to feel better and I hope you do feel better by now.  Has the medication you take helped you?
 
Tammy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/1/2012 9:23 PM (GMT -6)   
My pain is less and the fatigue is not as bad. I'm not 100% better but so much better than I was in Feburary.
Before medication I hurt everywhere on a level 6 out of 10, sometimes higher. I would be so tired I couldn't raise my arms.
Now my pains stay around a 2 out of 10. I'm able to do more around the house and at work. I still get tired but not as quickly.
Joy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 1/1/2012 9:23 PM (GMT -6)   

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 610
   Posted 1/4/2012 9:41 AM (GMT -6)   
Bill, u are so fortunate. No symptoms, no flare, and no medication!!!! That's a dream for me.
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