Sjogren's? Is this what it is?

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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 9/26/2007 9:15 PM (GMT -6)   
Hi guys,
    I am new to the Lupus dx as of this summer. I have a problem with thirst. I drink and no matter what the heck I drink I am thirsty. My blood sugars are fine so thats not it. I went for a follow-up at the Rhuemy today and he said with my high titer Ro and La he is betting on Sjogrens being the culprit. He says it tends to walk hand in hand with Lupus . The thing is my eyes are fine! I do not have problems with anything other then the thristy feeling. My mouth isnt dry either. I have no lack of saliva. I swallow perfectly fine. My skin isnt dry and my eyes are great. Dr. doesnt feel its kidney's and I do agree with that. Any of you guys have Sjogren's dx only by high titer Ro and La and a thrist you cant quench? You know I feel like I get handed dx's by the halloween candy givers. Reyoud's Lupus and Sjogrens? Convince me........ 

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 9/26/2007 9:30 PM (GMT -6)   
Hi Chaya,
I think the standard way of diagnosing sjogrens at first is to give you a schirmer test where they put a special piece of paper in each eye to measure moisture, then it is followed up by a lip biopsy and bloodwork for ssa and ssb. I have been diagnosed with sjogrens by a schirmer test.

As for dryness, you don't always notice it, but once you take the medicine to create more saliva, like salagen or evoxac, you definitely notice a positive improvement. You have less tartar buildup on your teeth, swallowing pills is easier and your eyes are glassier. It is possible to not notice the dryness, but I would ask him to do a schirmer test if he hasn't already.

As for thirst, I've never heard of sjogrens causing excessive thirst, but diabetes and hashis can, if my synthroid is messed up (too high or low) I get water/sodium balance problems and it makes me thirsty. Medicines can cause excessive thirst and being out in the hot sun alot is really dehydrating and if your meds make you sensitive to the sun then you can get it worse, I get really thirsty. I had a problem where I was drinking almost two gallons of liquids a day and my urine was clear like water and my doc just told me to drink less. It was hard, because I was so thirsty, but once I did, the thirst went away. I guess its a viscious cycle sometimes. Also, she said drink gatorade, because the problem was electrolyte imbalance more than dehydration, so she said I was thirsty because I wasn't getting it quenched with what I was drinking, even plain water. I'm sure there's other stuff that causes real thirst and I'm sure someone else will post. My sugar was not elevated or low during these periods of excessive thirst and I never got a clear explanation of why my electrolytes keep going out of whack. I am on a diuretic (HCTZ). Also, it may be the hot sun thing and sun sensitivity. I hope that you get through this and be sure to keep in touch with the doc if it doesn't go away because one time, my bladder and all shut down and not only did I have excessive thirst, but I didn't urinate for three days and boy did that hurt and I had to go to the er and be catheterized, twice it happened. two other times I had to get ivs of electrolytes.

It's been a hot year where I live. Anyway, I hope this helps some and I hope you feel better soon. I know that thirst thing is the worst, its just awful. It seems the more you drink the worse it gets sometimes. Gatorade did make a difference for me and there is some sugar free stuff like that, fitness waters and all. Take care.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 9/27/2007 8:19 AM (GMT -6)   
My Sjogren's was dx visit the eye test. I've heard of people on here that were dx with the lip biopsy, but don't think I've seen thirst related to it -- dry mouth, yes.

I think I'd look for a second opinion if possible.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 9/27/2007 2:07 PM (GMT -6)   
I agree with Marji and Lynn, excessive thirst isn't a part of sjogrens.  I have the elevated "stuff" and was diagnosed by those, and just very slightly dry eyes.  Actually, my sjogren's is hardly ever noticeable.  Sometimes I wonder if I really even have it.  I think it's important to remember that even though our blood tests may come back saying we have an eleveated "whatever", it doesn't mean we have the condition.  Lots of people with a positive ANA don't ever get sick or get a diagnosis of lupus or anything!  There are those of us with a negative ANA who have so many lupus symptoms and problems that the diagnosis is smacking them in the face.
I would get a second or third opinion on this. One clear indicator of sjogren's are swollen lymph nodes.  You'll find those under your jaw line and behind your head at the base of your skull, also under your armpits.  Those are area where you'll feel or see them best.  If you have sjogren's and it's flaring, you'll have swollen lymph nodes.  Did your rheumy check those?
Definitely get more info and another opinion.
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(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 9/27/2007 5:32 PM (GMT -6)   
I think I must have left out too much info. I abosultely have Lupus. I was diagnosed by symptoms and test results. I had the malar rash and I could go on forever . My question was only in relation to the Sjogren's. I do not feel I have it at all . The Dr. tossed it out at me with the constant thrist issue. He told me it is very common for Lupus patients to experience some of the Sjogrens symptoms. My eyes are perfectly fine. Thanks for answering my quesiton.
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