remission

[gold55]

Does SS ever go into remission?  I thought I read somewhere that it doesn't go into remission like RA does...is this true?  It would be nice if it could give our bodies a break for a few weeks!

[Scottietottie]

Hi 

I think it's unusual for it to go into remission. However, I also think that mine did go into remission for about 5 years. For most people the most 'remission' they get is the time between 'flares'.

It's such a very individual disease. Some times are better than others though.

Take care - Scottie 

[Meld256]

Good question, and answer is I don't know.   

I haven't had the issues for long enough to know, I suppose.  After 2 years of dealing with this, I can say I am doing as well as I feel I can for now. 

Think I've finally found the right combo of drugs, ways to de-stress, and how to live my life to the fullest with limitations.  We will just wait and see what the future holds. 

[Jellyb]

I had a friend of mine ask me a while back " aren't you in remission yet?". I was kind of having a bad day and that really hurt my feelings.  Was not sure how to answer that so I just said " nope"

[TripleC]

I would love to believe you can go into remission..... for about a month now my eyes are doing great, only have to put eye drops in a 3 to 4 times a day, I quit using Restassis and my mouth does not seem very dry anymore.

I was thinking maybe it is the weather or ?   Somedays I even begin to wonder if I even have SJS . I do still have muscle/joint pain. 

Or is this a dream ?

[gold55]

what is your weather like now?  our summer has ended and it's getting cold and dry so I'm a bit worried it's going to be worse for me.  the "fullness" in my hand is down....that seems to be affected by heat for sure.  I'm happy for you and that gives me hope of some good weeks.  Sometimes tho, I think the SJS just has migrated to a different area of our bodies when our eyes and mouth feel good!

[irish]

For those of us with this fun disease there are times of the year that are worse.Summers just about kill me and I can't wait until winter and snow come. That is when I feel the best. Today in MN it is about 80 or above, beyond dry and need rain (it almost feels like Arizona it is so dry) and the wind is blowing the dust and corn and soybean dust from the fields. Sometimes it looks like a storm coming on the horizon and it the farmers taking out the crop.

Anyway, as far as remission goes, I have not read anything that leads me to believe that we will have remissions---at least the long ones that some people have.

I know that over the years I had times when I felt better, but I always seemed to have one thing or another and was going to the doctor. Sort of like the neuropathy then the arthritis, then the body aches, pain and flu like symptoms. Also, the lungs and the bronchitis from the thick mucus. Also, I had a lot of bladder stuff going on for years and that would almost do me in cause of theh pain and inability to get good sleep when I was working. I think I have had chronic sleep deprivation much of my life from one or another of these symptoms being active much of the time.

I guess I am just thankful for the times that things aren't as bad and you know if you brag about feeling so good today you will find that in an hour or two you do the dive and feel sick as a dog. Sjogrens really is a fickle disease. I guess if anyone would ask me if I had had a remission yet I would ask them to describe what a remission is cause I don't think it has happened to me for 40 years. Irish

[Narablueeyes]

I had a friend of mine ask me a while back " aren't you in remission yet?". I was kind of having a bad day and that really hurt my feelings.  Was not sure how to answer that so I just said " nope"

Wow...

That's low.  You handled it better than I would have.  I'm afraid I would've opened mouth and inserted both feet.  :-D

[Jellyb]

Thank Nara :-)
This is why I love this forum, you guys are all soooooo undwrstanding.

[gurs]

Irish, Im with you...I feel best in the winter...the warm seems to aggravate all my neuro issues just like MS. The allergans seem to make my whole body flare as well.

People dont understand that this most likely wont go into a remission, we have to deal with the not knowing of how we are going to feel
1 minute to the next. Its a nightmare for most of us. Ive been in a horrible flare for the last 5 years and cant seem to get out of it.
No one understands....because I dont have cancer etc. I wish I could get rid of this for at least awhile and get my life back again. I have hair
that prob wont grow back at all either.

Gursie

[LizPetillo]

People dont understand that this most likely wont go into a remission, we have to deal with the not knowing of how we are going to feel 1 minute to the next. Its a nightmare for most of us. .... No one understands because I dont have cancer etc. I wish I could get rid of this for at least awhile and get my life back again.Gursie

DITTO EVERYTHING YOU SAID HERE!!

[lolo1979]

What I don't understand is - why CAN'T it go into remission?  I have read that too - that sjogrens doesn't go into remission. But why would that be? How is it THAT different from Lupus, MS, RA, etc? - which can all go into remission?  Plus, for myself (and I think for a lot of us), we weren't born with this necessarily.  For me, it kicked in MILDLY in my mid-late 20's (mildly, meaning I didn't even know I had it).  It didn't kick in full force until after my second baby (this past year, early 30's).  So my question is, what "turned it on"?  And why the heck can't we find a way to turn it back off?  I have to think - at the very least - that we can have periods of low activity, and be near remission.  That's what I will tell myself, anyway, because I don't think I could drag myself out of bed every morning thinking otherwise.

[gold55]

Hi Lolo! 
My sentiments exactly!  Mine kicked in at post-menopause which they say is common however not sure if the gene was activated during menopause (I have read many articles about low hormones triggering the gene and I didn't take hormone supplements) OR did I really have this since my early 30's and it's taken 27 years to rear its ugly head!?  Are you currently taking any drugs for your SS?

Jill

[gurs]

Mine started when I hit puberty, then, after my total hyster and menopause 5 years ago, just go so severe.
Ive read so many articles/books on this and some say low estrogen, some say High levels of estrogen? who the heck knows!!!
I def think its hormone related though...for sure!

Gursie

[ohiolady]

Mine kicked in at age 51 during a period of hormonal upheaval.  I was very sick the first two years and gradually improved.  I can't say remission but a definite sustained period of improvement and it can't all be attributed to treatment.  Because I started treatment 6 months after symptoms began and it helped but I've definitely continued to improve since.  Gastroparesis probably hampers my quality of life more than anything now.

Just want to offer some encouragement.

Anna