Just curious if anyone on this board has ever talked to or heard of anyone who has gone into remission with Sjogrens? I guess you hear all the other things from mild to severe, I wondered if anyone goes into remission and for how long?
Jocelyn :o
Hi Jocelyn :)
Yes - I did - for about 10 years which was nice.
Take care - Scottie :)
This what I've meant when I've said many times that I raised my family, worked, and played without thought to sjogren's!!!!!!!!!!
I did too for about 10 to 15! I say ten to fifteen because about five of them I did bave a few issues like occasuonal joint pains in the feet, but they were fewer and further apart. Yes it was nice I lived and loved my life, was free to do most anything I thought to do.
I went into remission with Fibro and I am hoping that I can do the same thing with Sjogren's. The alternative is helping enough for me to apply for a job this evening. For good or bad with luck I may get it.
Someone on an earlier post said their doctor said you really don't go into remission rather you just don't have a flare for awhile.
Yeah, I saw that too and thought to myself that I did not agree with that remark by the doctor! I have said many times before this question arose that I did, But! I must say I believe it returned with a vengence! Where as years ago I seemed to flare only every 6 months or so no fatigue -then remission -flare in feet and back every year or so no fatigue- now full body pains and/ or discomforts almost nonstop, I hurt many place EVERYDAY and fatigue with little movements EVERYDAY!!!!!
Now don't get me wrong I can have a full blown slap down flare that EVERY INCH OF MY BODY HURTS, FEVERISH, TOTAL EXHAUSTION LIKE LIFE IS BEING DRAINED AND BRAIN FOG THAT MAKES YOU WONDER IF I SHOULD BE LEFT ALONG ON MY OWN. These come at will or if I'm stressed or over taxed pushed beyond my limits or go too long without rest, MOST ANYTHING CAN BRING THEM ON NOW!!!!!!!!!!!!!!!
there's a flare then there's a FLARE! Know what I mean??
Strictly speaking, remission is defined as slowing of disease: a lessening of the symptoms of a disease, or their temporary reduction or disappearance, so I suppose we can consider what I call "unflare" days as being remissions, but medically, remission is more long term, with normalization of lab work in addition to the rest of the definition.
I haven't really had this sort of situation occur with SjS, but in the 30 some years I've had sarcoidosis, there have been periods during which my doctor referred to my condition as being "quiescent", meaning that the underlying effects ( fever, rash and fatigue in my case), lab work and tissue changes were still there, but nothing new was happening.
My dr says you can go into remission.
Voiceteacher
Remissio? is that like hitting a tree on a sled,, and just stopping long enough to check yourself out for body damage before going down the hill again ? I;m still waiting to hit that tree,, just long enough to check out the damage .
Its too bad we can't trust our doctors to all be giving the same answer.
Straight from the Sjogrens web site:
http://www.sjogrens.org/home/about-sjogrens-syndrome
All instances of Sj?gren?s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission.
My Rheumatologist said that Sjogrens does not go into remission but some people may not have many flares and think it is in remission. I believe my Rheumy. He is a good doctor. Also the Sjogrens web site even says: "uncommonly, go into remission."
There you have it.
Also, see this web site:
http://en.wikipedia.org/wiki/Sj%C3%B6gren%27s_syndrome
Prognosis
Sj?gren's can damage vital organs of the body with symptoms that may plateau or worsen, but the disease does not go into remission as with other autoimmune diseases.
My work is done here. Stay moist you guys. :)
malew/sjogrens wrote:
Quote"uncommonly, go into remission."
At least there is still hope.
I have confused my Rheumy and GP with high numbers (flair) and low numbers on my blood tests. My GP is doing more research on what I am doing with alternatives. My Rheumy has written me of for cheating on the tests. (My results do not correspond to what she was taught in school so it can not be true.)
Hi
I spent my thirties with tremours, numb feet, unsteady gait, joint pains etc etc. Tested for MS. Not MS. They didn't test further. Wasn't obviously dry then but had a mouthful of cavaties.
I fell downstairs and fractured my spine just above the coccyx. Must have really shaken up the nervous system. Hurt like hec so I wouldn't recommend trying it. As my back healed though - my other symptoms went away and I spent my forties able to be a lot more active and considerably less fatigued.
Symptoms started creeping back along with menopause. Dry now but numbness and trmours not as bad as they were in the late 80s.
I call that remission.
Take care - Scottie :)
I'm o.k with not calling it remission, let's just say I went many years between flares or the thought of sjogren's!
I agree with Linda that it's probably a lessening of symptoms. There are the mini flares where your mouth might get very dry for a week or so then there's bigger flares, where several symptoms get going at the same time with more severity!!
Lesley (NZ)
It is what it is. What you see is what you get. Some day you get the bear and other days the bear gets you. My take on the whole situation.
I have to add that I don't know what a remission is nor do I really know what a flare is. I have just had "issues" for 47 years. Some days not there only to return the next day or the next week. Would have mornings when I woke up and hardly able to move my hands, fingers or step on my feet and walk. Would put hands under cold water and slowly move the legs and feet to get them going. I worked as a nurse and had to be on my feet most of the time. By the time I would get to work I would loosen up. Took tylenol or Naprosyn occ. but just thought I had "arthritis of some kind. Well, I guess I sure did.
All the aches and pains and then by afternoon I would be out in the huge garden working or helping to bale hay, etc remodeling house, helping with the animals on our hobby farm. I knew I had to rest a lot and I hurt a lot, etc but when you are young and raised with a good work ethic you just keep on keeping on. Like most of us I don't know how I did it and I never knew enough to worry about remission or flares. Had some really bad days and nights but usually made it to work.
The worst "flares" I had were when our boys got married. I always ended up down on the couch with "asthma" (which I now know was myasthenia) and had to take prednisone burst and taper. Would miss 3 days of work. Like I told my rheumy---even the good stress would do me in. Irish ;D