Afraid to ask

Does this disease, Sjogren's Syndrome (or as I call it, the Nazi) progress? And if so, what can I expect 2 years, 5 years, 10 years down the road?

There is no timetable, Bigrudy, it varies a lot for everyone. Rae posted a discussion recently having seen an article 'Stages Of Sjogrens'; the answer TJ1 gave was informative if you want to have a look: http://www.sjogrenssyndromesupport.org/forum/topics/stages-of-sjogrens

Some people only ever have the 'sicca' symptoms of dry eyes and dry mouth, others progress and have lots of organs affected. Some people find the medications are really helpful, for others they're not, or can't be taken... Best to take each day as it comes and try not to look too far ahead, I find.

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Thanks for the info!

I don’t have an answer but how I wish I knew to organise my life accordingly! I feel like quitting my job to try to enjoy my “good” times cause it’s only gotta get worst isn’t it? I was able to go back to work (almost full time now) after 8 months of intense fatigue. I don’t know why but I got better. A positive note here, I even have some hair growing back and they get greasy! wow!! never thought I’d be happy about that but it’s seems like a miracle! I know there will be more crisis to come… but hang in there and keep hoping friends, our body might not be able to heal completely but if they can get better from time to time… I don’t know but it gives me hope. Feels like I’m fighting back and that’s what life is all about, I guess…

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You got it dry frog. We do better by celebrating the little things.The fatigue , the flares, the changes in appetite do fluctuate and some phases last longer than others. I get through them by remembering they are going to pass. Glad you are on an upswing now. Hang in there!

Good for you!!! Did you lose all of your hair?

No, it wasn’t that bad but it does show, and it was scary because I didn’t know when (or if) it would stop. I was loosing so many, like handfull of it everyday, and they became very dry. I don’t know if it’s the vitamines or the chaga (I’ve been trying many things) or if it’s the love of my friends or a miracle or what but I’m keeping my finger cross for this good time to keep going. (I mean, my hair still look like shit right now but… my hopes are high!) And I wish all of you the same (less the shitty hair of course)!

So glad things are on the upswing again for you. There are times when the only way I get through is remembering that it does get better, too.