Questions about Primary Sjogren's

[gsmraxe]

Does anyone know, if someone has Primary SJS (no other AI), can that person develop another AI disease later on?  Or is that just it.  Anyone out there that has Primary SJS that developed something else later on?

For those that have Primary SJS, and have had it for a while, how are your joints?  Over time does your Arthritis get worse?  How about the dryness all over?  Same? Worse?

I'm asking because I've started going to my Chiropractor and she says my stiffness and joint aches aren't normal for a 39 year old.  The RA told me I have a "little" arthritis in my back, but it hurts so bad some days, I wonder how I'm going to feel in 10-20 years.

Thanks all!

[Scottietottie]

Hi gsmraxe 

As far as I know you can keep on developing AI diseases. All too often they travel in packs. You might not though. Sore joints and stiffness go along with SjS anyway.

You can also get osteoarthritis which is not autoimmune. There are about 100 different kinds of arthritis according to the arthritis site on About.com and a lot aren't age related.

I've had joint pain since I was in my mid thirties and I'm in my mid fifties now.  (I don't have RA)

Take care - Scottie 

[gsmraxe]

Hi gsmraxe 

As far as I know you can keep on developing AI diseases. All too often they travel in packs. You might not though. Sore joints and stiffness go along with SjS anyway.
You can also get osteoarthritis which is not autoimmune. There are about 100 different kinds of arthritis according to the arthritis site on About.com and a lot aren't age related.
I've had joint pain since I was in my mid thirties and I'm in my mid fifties now.  (I don't have RA)

Hmmm, so it's a you might you might not?  I found out I have osteoarthritis in my back, probably in my other joints too, seeing I get so stiff after sitting for a while. 
I was mainly wondering if it's possible to get another AI disease if all I have is SJS right now.

Thanks Scottie!   

[Katybarstool]

Hiya

Do either of you two guys find that your knees are stiff and sore after sitting a while? I have osteo arthritis in most places, but my knees are reasonably ok. It's just the past few weeks I have found that, if I've been sitting in the same position for a while, my knees become stiff and sore.

Kathyx 

[gsmraxe]

Hiya

Do either of you two guys find that your knees are stiff and sore after sitting a while? I have osteo arthritis in most places, but my knees are reasonably ok. It's just the past few weeks I have found that, if I've been sitting in the same position for a while, my knees become stiff and sore.
 

Hi KathyX!

Yeah, I've noticed in the last 5-7 years I get stiffer and stiffer after sitting for longer than 5-10 minutes.  I've been seeing my Chiropractor again and she noticed how much worse I am since I saw her last (Feb 07).  My knees, back, hips, ankles, wrists, elbows and fingers ache and stiffen up on me.  I thought I was just getting old   

[pudmott]

Hi gsmraxe,
It is possible to develop other AI's along the way. It could be that sjs is just the first one to show up. But as you said too. Nothing else might show up and there is just primary sjs.
But to answer your question yes it is possible

Pud

[salsen]

I am primary person  and the aches and pains go in waves.  I can go long periods with hardly any aches in the joints and then wake up one morning and everything from top to bottom hurts.  Why - don't know.  It seems to be different from the osteo aches and pains because when I ache all over the fatigue factor kicks in too.  I feel like I am dragging around a thousand pound weight. I deal with a lot of pn pain so thankfully the really bad joint pain is not consistent. 

I am pretty sure that you can develope other AI problems after being diagnosed with primary SJS.  Consider yourself lucky if you have the one.  As they say it could be worse, which two or more AI conditions would be.  I have both knees replaced so I do have aches in these joints.  I have had problems in a few joints because the padding between the bones has worn away.  It is still up for debate whether SJS helped it along. 

The fatigue and aches from SJS sure can make you feel thirty years older.  The best I can tell you is to enjoy the good days and rest as much as possible on the bad days.  I just wish they would come in equal number instead of the bad outweighing the good. 

Good luck hope your aches go away for awhile!

[lesleyjoy]

There's probably more people with two or more AI's than just one and there is a lot of overlapping so it's often difficult to tell which one is causing what? (if that makes sense  )
Sometimes people have Lupus or another connective tissue disorder, then develop Sjogrens or in my case Chronic Fatigue Syndrome (not classified as a AI yet, but it is) then Sjogrens...I'm sero-negative, so I could have Lupus as well (I have some Lupus symptoms). Whatever I have, the Sjogrens is secondary, unless I've had it all along and it hasn't shown up in blood tests yet  ...that's probably unlikely after 25+ years, but who knows 

It's all very confusing but I continue to analyse and theorise about it in my spare time 
Cheers Lesley (NZ)

[beverley]

I have been diagnosed Primary Sjogrens and I suffer badly from my joints.   I have Osteo in my neck hands and feet but my knees and elbows are also very painful at times.  I sometimes feel like someone has taken a hammer to me all over.  The fatigue is indescribable and the brain fog - don't get me started.  At present lower back is very bad too.

Beverley

[RitaB]

Beverly - I like your description/comparison of your paid:  You feel like you have been beaten all over with a hammer.  I know it's horrible to feel that way but what a way of putting a picture of your suffering into the minds of others (especially for those who just don't get it).

[gsmraxe]

Thank you for your responses.  I ordered a few books about Sjs and read that having  Primary SJS means there's a good chance of "acquiring" another at some point. 

In case someone is interested:  I really enjoyed "The Sjogren's Syndrome Survival Guide" it's a good book, authors are Teri Rumpf and Katherine Morland Hammitt. published by New Harbinger Publications Inc.  Very well written and interesting to read.  It's answered a lot of questions for me.   

[pudmott]

I got that too and the New Sjogren's handbook and theyare both very good and answered a lot of questions


Pud

[gsmraxe]

I got that too and the New Sjogren's handbook and theyare both very good and answered a lot of questions


Pud

Thanks!  I'm going to purchase the new sj handbook now.