CTD Vs Lupus Vs Sjogrens Vs RA Vs...Augghh!!!

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Date Joined Dec 2007
Total Posts : 24
   Posted 1/5/2008 7:42 PM (GMT -6)   
Ok, so I'm now about going crazy. (As if I haven't already been and stayed there).  I think my rheumatologist is leaning toward connective tissue disease as opposed to straight out lupus. So that means???  I'm thinking that I instead of having only one set diagnosis with additional "issues" I have the "issues" and not truly one of the diagnosis?  I'm so confused right now.  Does anyone have Sjogrens syndrome by itself? I need to get lymph node biopsies every other month?  Is this making sense to anyone?
Help! eyes sad
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids

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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/5/2008 8:29 PM (GMT -6)   
Well Be . . .

Lots of us are in the CTD (connective tissue disease) category. Most of us have been dx'd by one or more doctors with lupus and then un-dx'd by another.

Most of us (me included) feel that the bottom line is . . . Is the rheumy treating your symptoms? Most of this stuff is treated in a similar manner and is fine tuned for each patient. So your doctor is doing you a huge favor if he/she keeps the word Lupus OUT of your medical files. This is sometimes done to protect your insurability and it is WAY appreciated by many of us.

Sjorgrens? Is that what your doc said? he'd have the biopsy done E/O month?? I sure can't answer to that. If you do have sjorgrens it is really important to be aware of it and to treat it as it can cause a lot of insidious problems including tooth loss and decay.

I hope some of the others with sjogrens will help you out with the biopsy question. I've only seen people tested on occasion until they are dx'd. But they could speak better about this.

Welcome to your own personal roller-coaster. Some hot tea for you sis!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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Date Joined May 2005
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   Posted 1/5/2008 9:40 PM (GMT -6)   
I think checking the lymph nodes regularly is fairly common with the more complex issues from Sjogren's. But I have only read that, not experienced it.

Most of us on here that have Sjogren's have it in a more minor way, where it's main effect is to cause dangerous dry eye and dry mouth conditions.

It sounds like your rhuemy is doing a good job in checking all the potentially relevant diagnosis, so I'd just do as he directs unless/until you find your symptoms are not being managed. So many of these diagnosis overlap each other that proper symptom treatment becomes the main issue.

Hang in there,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
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Date Joined Feb 2003
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   Posted 1/5/2008 9:57 PM (GMT -6)   
Hi Blessed,
Yeah, Rosie and Lynnwood are right.  Instead of trying to have one particular name for all these overlapping disorders, it's a lot easier on the mind and the sanity, if you pick just one, like MCTD, and accept the treatment that will come for everything you have.  The same treatment is used for all of those conditions, so trying to nail down the exact name of what you have isn't really the main issue.  Although, it would be nice to know what it is for sure, that you have.  I can understand that entirely. 
Be good to yourself and perhaps think of this as MCTD, which really is lupus, and all the other crap combined into one big long word, LOL.  The treatments are the same, and that is the most important thing - getting the right treatment.  Autoimmune disorders like these suck.  And I absolutely understand why you are feeling like you're going crazy with all this.  It really does wear you down mentally.  I'm right there with ya.
Yes, you can have sjogren's on its own.  I think it's odd that you need a biopsy done every other month.  The only thing I can think of for that is that your doctor thinks this is fairly aggressive sjogrens.  Just make sure you really get all the info on this.  Are you fairly knowledgeable with sjogrens and what it involves? 
I hope we've helped to calm you!  I know it's hard.  So hard.  We're here for ya,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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Date Joined Jul 2005
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   Posted 1/6/2008 11:05 AM (GMT -6)   
BlessedBe, your post really shows how frustrating and confusing this whole thing is. Like the others said, a lot of us have a connective tissue disease diagnosis. I have an undifferentiated connective tissue disease diagnosis on paper, but my rheumy says I have lupus and sjogren's and also some symptoms of raynauds.

I've never had a biopsy for my sjogrens either, so I don't know much about that. I just started on evoxac to increase saliva and it has worked very well for me. I still struggle to keep my eyes wet though.

Hang in there. All of this can be really overwhelming and confusing, but just know that we are here for you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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