Is anyone NOT getting better with treatment?

[Gayle]

I just asked today to come off the Plaquenil due to side effects and it not doing much for me anyway...

[Tivia]

I do not get better with treatment but I don't expect to.  I take Plaquenil, which is considered a DMARD or disease modifying anti-rheumatic drug that is meant to slow the progression of our disease, not back it off.  Pilocarpine (or the similar medicine Evoxac) are meant to mitigate our dryness symptoms for brief times---again, not really changing anything permanently for the better.

You know this is very sobering to me. I think up until I read this and it actually hit me..omg there is no better. This is as good as it gets, I never really fully accepted before that there is no cure, and most likely no remission.  How come some people never go on plaq and never get anything more than eye and mouth symptoms. And others try so hard to halt the progression with every drug available and still get full advance of the disease.  It makes no sense to me, how can you know who will be ok and who will suffer terribly.

[mshistory]

Me too. I just keep getting worse and worse  Hoping for a change once my Imuran dosage is increased, but I'm not getting my hopes too high.

[MaryBee7]

Thanks to everyone for taking time to answer my question.  I agree with ALL of you on many levels.  "Hit a wall" sums it up.  Cognition problems are over the top.  I know that leaving my job is an...incredible step, and a year ago I would have laughed it off.  Was still able to "deal", at least to a better degree, with my boss, Mrs. Hitler.       I should get results of a sleep study next week, can only tell you that "deprivation" just about describes me to a T in the sleep category and that's been worsening along the same curve as the rest of Sjogren's...as if, when it kicked in, it Really Kicked In.  I've worked sick for nearly 6 years and am...just over it.  Am Tired of being brushed off, brow beat by medical professionals, told "you are depressed."  Well, duh!  Nearly lost my job in '09 because of slowly slipping away cognitive and physical symptoms -- pre diagnosis -- was written up for insubordination, it is a too long story!   So.  The latest is numb left arm and hand, no taste buds.  Was always a healthy eater with a little chocolate mixed in.  Ha.  There's more but you all know the story.  I honestly don't know what I'd do without this and a few other internet sites!  Love you all...cyberly!  Mary Beth

[Ark mom]

Marybee, I wish you weren't having so much trouble, but maybe now you can really focus on yourself, do things that give you pleasure and take your mind off of things.  I'm not working right now, and it is easier to take a slow day here and there when needed.  I have more flexibility, hopefully you will, too.  Peace and hugs!