Remission? Flares?

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doodlebee
Regular Member


Date Joined Mar 2008
Total Posts : 60
   Posted 3/10/2008 5:58 PM (GMT -7)   
These might be dumb questions, but I'm a little confused...

Does lupus go into remission where the disease is not active at all for awhile and you can go off meds and are symptom-free during that time? Or can you be in remission and still have some symptoms like fatigue and aches and pains? Or does it not really go into remission, but just fluctuates in disease activity and intensity so you have to keep taking the meds forever to keep it under control?

Hope I'm even making sense...
Thanks for being so patient and helpful to those of us who have so many questions.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/10/2008 7:11 PM (GMT -7)   
We're all here to help each other out, feel free to ask all the questions you have.

The way remission was explained to me is symptom & med free, unfortunately my rheumy said only 3% of people go into a full remission. I think a lot of people can keep their disease / symptoms under control with daily meds and there are those that their disease is not under control thus feeling like you're in a constant flare, or at least that's the way I felt before getting on the right cocktail of meds, of course we are having a hard time getting my joint pain under control and my labs have been wacky for a while but I know it takes time.

I hope I have answered your questions, I am sure there will be others that can probably explain better than I can. Take care and hang in there!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/11/2008 7:22 AM (GMT -7)   
doodlebee, I think I have come to understand remission the way that Stacie explained it. I think it's pretty rare to go into full remission to the point where you wouldn't need meds, but there is a better chance that hopefully symptoms can be kept under control with the right combo of meds so that you have a decent quality of life.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 3/11/2008 7:37 AM (GMT -7)   
Kind of weird...
I was going to come on here and ask about remission also. So thanks Doodlebee!

Gotta admit - was a little disheartened by the 3% figure. But, I guess deep in my heart - I had the feeling it wasn't likely to happen.

I've been working on reducing my prednisone. I've got down to 7 mg/day. Went in for blood work and my Anti-dsDNA is still high and my CRP hasn't dropped at all. The doc said I cannot reduce my prednisone anymore and that I have to increase my methotrexate to 20 mg/week.

My joints have been hurting so bad the last few days - I'm actually thinking I might have to go back up to 8 mg. And, that just ticks me off. I WANT OFF OF PREDNISONE!

So - here's another question:
If you never get off of prednisone, do ever stand a chance of losing any weight?

Admittedly, I've not been exercising at all. The fatigue is just about unbearable. If I could drag my sorry butt out to walk, is it even going to make a difference with the weight? I know it will help my heart, etc.

Can you tell I'm having a pity party today?

Thanks for any insight...

~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 9 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil, lybrel, Keppra (as needed)


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/11/2008 6:55 PM (GMT -7)   
Hi Doodlebee:

Stacie and Hippimom gave you goo descriptions of what remission means. I've been sick for 19 years and 13 years of it untreated. I've been doing poorly ever since June 2001. I have to say I've only gotten worse as each year passes. I'm hoping with the prednisone methotrexate and humira that I'd have my disease under control. Of course I've got multiple health issues, my MDS and lupus are feeding off of one another I certain of it.

Anyway, I've not been in a remission and I'm in a constant flare. I hope things continue to improve for you. Dakota I've been on prednisone since 6/2001 and I have to say I've not managed to have a significant weight loss except for when I had C-diff. After my C-diff was gone I put the weight back on that I lost. I'm afraid the weight battle stays with us as long as we're on pred.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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