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Old 10-05-2012, 08:54 AM   #1
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Having Sjogrens without positive labs?

I'm alittle confused. I seen my primary who is referring me to a dr (can't remember what he's called) to do a lip biopsy.
I talked to her about wanting the lip biopsy because labs for Sjogrens have been negative but I read they aren't very accurate.
I explained that I've always had dry mouth & eyes & didn't think about it till more recently because its so normal for me. I seen a new rhum not long ago who commented on how dry my mouth was. My primary dr looked at my mouth and commented it was so dry the tongue stick sticks to my mouth.
I've been diagnosed with fibro. She said that people can have Sjogrens even with negative labs. That even with no positive labs its obvious they have Sjogrens going by symptoms. She then mentioned some dissorder that is Fibro & Sjogrens symptoms & told me to look it up but I can't remember what it's called... Anyone know what it is? I thought she called it short or smart syndrome, something like that...
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Old 10-12-2012, 05:36 AM   #2
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Re: Having Sjogrens without positive labs?

The doctor may have said sicca syndrome, which means dry mouth/eyes. My rheumatologist won't do a lip biopsy unless there is some medical need to confirm Sjogrens as opposed to some other disease. She said that confirming Sjogrens doesn't change how she treats the symptoms, so she wants to spare the patients the expense and pain of a biopsy. I suggest that you discuss with your doctors taking a prescription medication like Evoxac for dry mouth and Restasis for dry eyes. Lots of people find them helpful. Good luck.

 
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Old 10-12-2012, 08:19 AM   #3
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Re: Having Sjogrens without positive labs?

Thank You
I have had derealization for 14 yrs. fibro pain is out of control, severe neck pain, migrain like headaches, nausea & vomiting that lasts for around 12 hrs & can't keep anything down. Not sure if it could be Sjogrens or something else. Just trying to find answers... I just have such dry eyes & mouth then read about Sjogrens causing Nuerological problems, pain, nausea & vomiting, ect... I'm at the point now where I'm think that the next time I get that sick I'm going to the ER. I probly should anyways but always say I'll go if it doesn't stop by morning & it stops by then... I figure all they'll do is hydrate me & try to stop the vomiting. But maybe if I go, it'll be documentation on how bad it is. I don't think my drs get it & I'm now good at explaining it... I'm hoping that if I do that, they'll finally figure out what else could be going on. Then I'm trying to figure out if I should go to one of the more local hospitals or drive 1 1/2 hrs to the best hospital in the state... OSHU...
I just don't think my drs understand how bad it is.
Anyhow, sorry for the rambling...
I bought an over the counter eye drop that is supposed to be helpful but it didn't seem to do anything...
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
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Old 10-12-2012, 08:45 AM   #4
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Re: Having Sjogrens without positive labs?

I agree with Fantine that Sjogren's can be diagnosed and treated without a lip biopsy just based on your symptoms. It may confirm the diagnosis but doesn't change the treatment, so is it really necessary? I would also work with your rheum to retest you for other autoimmune disorders, in case the fibro is really something else that just couldn't be identified before. Your eye Dr. should have info and treatment suggestions for dry eyes, and your dentist may be helpful for the dry mouth suggestions. There is also a Sjogren's Syndrome Foundation that has help for people with the disorder.

 
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Old 10-13-2012, 07:41 AM   #5
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Re: Having Sjogrens without positive labs?

Hi, I am also newly diagnosed with Sjogren's and have Fibro. My ENT thinks since the blood test was negative that it is secondary and there is something else not yet diagnosed. I also have the nausea but so far no vomitting and it comes and goes.

I was also not getting enough relief from the eye drops but was told to try a bunch of them and I did find two that work the best for me. I also found that the thicker ones are great for overnight and my eyes don't feel as dry in the morning.

I find that I can function almost normally (6 am to 8 pm) for a few days then I am crazy tired and can't function for a day or so and just need rest. Also, I take one 50 mg Nortiptilyn at bedtime for Fibro but it seems now, since Sjogren's, I cannot get though the day without a few Advil. I guess Fibro and Sjogren's together is common

Hope you are feeling better soon.

 
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Old 10-13-2012, 11:04 AM   #6
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Re: Having Sjogrens without positive labs?

I would just comment that Nortriptyline causes very dry mouth as a side effect, and may be making the dry mouth worse. You might consider talking to your Dr about weaning off that, and if you need something for sleep, trying a newer med that doesn't cause dry mouth. Cymbalta is being used for fibro pain and is much less drying to mouth. As far as the secondary to Sjogren's, you should have a workup, if you haven't already, for autoimmune diseases that often accompany Sjogren's like lupus, RA, Hashimoto's thyroidits. Those could explain your severe fatigue after a few days of activity, as well the need for Advil. If a previous workup is a year old or more, I would suggest getting it repeated.

Last edited by ladybud; 10-13-2012 at 11:05 AM. Reason: added last sentence

 
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Old 10-13-2012, 12:07 PM   #7
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Re: Having Sjogrens without positive labs?

Hello,
I seem to always have a headache, pressure... But sometimes just worst. So had bad headaches for over a week. Always so exhausted but lethargic yesterday then vomited stomach acid 3 times last night. 2nd time I've been sick in a week. I always have neck pain, that's my worst pain & blaim fibro for it. I blaim dry eyes & mouth on possible Sjogrens.
But did some reading last night & with the bad headaches & vomiting I guess I née to go to the ER & that it means something dangerous is going on. I check my temperature & that's always normal. So now I'm thinking the headaches & vomiting may be something different... I was miserable & the last thing I wanted was to go anywhere. But asked my hubby to take me. Because he called in last Saturday to stay with me, he couldn't call in again. So didn't go. But the next time it happens I'll go in.
In the mean time I'll try different eye drops. I have noticed its worst in the evenings also...
Thank You everyone for your help & support
I know I'm on the right path... Just takes time... Just so sick of being exhausted, hurting & sick.
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 10-13-2012, 06:28 PM   #8
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Re: Having Sjogrens without positive labs?

I just noticed on your list you have hypothyroidism. In view of the chronic fatigue, I would just make sure your thyroid levels are being monitored carefully and are at optimal levels to keep your energy up (TSH around 1, free T4 and T3 in upper 1/3 of normal range). If they aren't, a slight bump up in your thyroid meds may help. Hopefully, your Dr will agree.

 
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Old 10-13-2012, 11:21 PM   #9
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Re: Having Sjogrens without positive labs?

My thyroid levels are almost hyper going by my labs but no signs of it being hyper, more hypo feeling... But I am about do for more labs again soon...
I am trying to drink more fluids... I haven't been drinking enough water lately. Just isn't appetizing... When I get more nauseous like I have been water just never sounds good. I make myself drink it, just don't think it's enough. I drink powerade zero more instead. But like right now, I've been trying to dink lots of water yet my mouth & eyes are so dry...
I drink enough fluids that i shouldnt be dehydrated. But I'm back to thinking about sjogrens... If I have it & not getting enough fluids... Maybe that's why I get such awful headaches, nausea & vomiting... I also have such awful joint & muscle pain but blaim all that on my fibro. My muscles can ache & feel so weak. Exhausted all the time. Aren't some of those normal for Sjogrens also?
I'm gonna keep making myself drink more water.
I've went through periods where I carry a gallon of water with me because I drink so much of it. But that's when it doesn't make me nauseated...
I'm still wanting the lip biopsy for answers. But will also push my dr for more help with the symptoms...
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 10-14-2012, 07:40 AM   #10
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Re: Having Sjogrens without positive labs?

Quote:
Originally Posted by ladybud View Post
I would just comment that Nortriptyline causes very dry mouth as a side effect, and may be making the dry mouth worse. You might consider talking to your Dr about weaning off that, and if you need something for sleep, trying a newer med that doesn't cause dry mouth. Cymbalta is being used for fibro pain and is much less drying to mouth. As far as the secondary to Sjogren's, you should have a workup, if you haven't already, for autoimmune diseases that often accompany Sjogren's like lupus, RA, Hashimoto's thyroidits. Those could explain your severe fatigue after a few days of activity, as well the need for Advil. If a previous workup is a year old or more, I would suggest getting it repeated.
Thanks, I do think I remember reading that about the dry mouth when I first started taking it and didn't have that symptom then but maybe now because I have been on it since 2007 it has started to have other side effects. I would have also thought that maybe the ENT should have mentioned that, too. Going to the Reumy on Tuesday so I will ask her about this too. I haven't seen her since she diagnosed Fibro in 2003. She had me on Celebrex and my pc Dr. thought she could manage Fibro with Nortriptilyn when Celebrex was taken off the market for a while. I may try a newer med but figured I would not change any meds until some additional tests were done and maybe additional things were definitely ruled out. I'm also a little chicken to try a newer med when you see the commercials and the warnings, yikes!


I just went to a new pc Dr. Friday and she ordered 7 blood tests, Lupus, RA, hormones etc so I hope she will get to the bottom of this. I have faith that she is a good Dr. and she seemed genuinely concerned. I will see her on Thurs to go over bloodwork results and I am going to try to keep to my normal shedule/routine until then and see how it works out

 
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Old 10-14-2012, 07:52 AM   #11
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Re: Having Sjogrens without positive labs?

Quote:
Originally Posted by ladybud View Post
I just noticed on your list you have hypothyroidism. In view of the chronic fatigue, I would just make sure your thyroid levels are being monitored carefully and are at optimal levels to keep your energy up (TSH around 1, free T4 and T3 in upper 1/3 of normal range). If they aren't, a slight bump up in your thyroid meds may help. Hopefully, your Dr will agree.
Just noticed this discussion about thryroid and have some questions if that's ok? On my routine blood work that was done in June just TSH was done and it was 2.15 - is this on the high end for the current thinking? Where do you find the info on what your levels should be for your age etc? I realized the other day that I have alot of the symptoms for hypothyroidism (I only know this because recently went through crazy time having one of my dogs diagnosed and really I have alot of the same symptoms he had: cold, no engergy, excessive shedding, becoming a "couch potato", decrease in exercise tolerance) I don't want to mention this to the Dr because she will probably think I'm nuts for the comparison and since I'm a new patient to her I want to wait a while before I tell her that I actually read up on things.

Thanks

 
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Old 10-14-2012, 10:24 AM   #12
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Re: Having Sjogrens without positive labs?

I'm really bad at reading results but you are on the low end. Not sure if that would be concidered Hypo but it is on the Hypo side... I'd ask for more thyroid test. Tsh just isn't enough...
How often do you do labs? My Rhum didn't do any for two yrs then my primary was upset it had been so long & I'm supposed to have them yearly with fibro because it goes hand in hand with other conditions & they can show up do quickly...

I did some reading on my meds last night and 2 of the meds I take cause dry mouth/dehydration. Savella & Tramadol. But I've always had dry mouth & eyes so figure those can just be making it worst... I never used to sweat till I started Savella & I sweat allot anymore...
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 10-19-2012, 01:41 PM   #13
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Re: Having Sjogrens without positive labs?

Hi!
I have also been wondering if being told from your Doctors that your symptoms sound like Sjogren's and your blood work is proving differently, how they go about diagnosing you then? My eyes are extremely dry and any kind of wind makes them worst. They will get all puffy in extreme winds. My toungue is dry and rough feeling like a cats toungue and sometimes white. I'm very tired and get dizzy. I have been diagnosed with Fibromyalgia and my Rheumatologist thinks I can't have Sjogren's cause all my blood work is normal? I also get really flushed in the face, neck, chest, and arms and is so heated when that happens. I told my Doctors that I feel like I'm burning up from the inside out. Does your blood work have to be positive to be diagnosed with Sjogren's?

 
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Old 10-19-2012, 04:26 PM   #14
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Re: Having Sjogrens without positive labs?

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Originally Posted by Curious12rP View Post
Hi!
I have also been wondering if being told from your Doctors that your symptoms sound like Sjogren's and your blood work is proving differently, how they go about diagnosing you then? My eyes are extremely dry and any kind of wind makes them worst. They will get all puffy in extreme winds. My toungue is dry and rough feeling like a cats toungue and sometimes white. I'm very tired and get dizzy. I have been diagnosed with Fibromyalgia and my Rheumatologist thinks I can't have Sjogren's cause all my blood work is normal? I also get really flushed in the face, neck, chest, and arms and is so heated when that happens. I told my Doctors that I feel like I'm burning up from the inside out. Does your blood work have to be positive to be diagnosed with Sjogren's?
Hi,

My ENT said he was pretty sure it was Sjogren's even though my bloodwork was negative and my pc dr. that is running some additional tests thinks the Sjogren's dx is correct but she wants to make sure there isn't anything else also since it often accompanies other things.

I, too, have Fibro and I also get the flushed face thing and was wondering what was causing that. I thought maybe it was because I'm 47 and possibly perimenopausal as I have crazy hot flashes at night. I also have some dizziness and weren't sure where that fit in either. I'm trying to figure out what is from what and could this just be some little virus or something that will go away, really hoping for that.

Feel better

 
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Old 10-19-2012, 06:25 PM   #15
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Re: Having Sjogrens without positive labs?

Quote:
Originally Posted by Boxermama View Post
Hi,

My ENT said he was pretty sure it was Sjogren's even though my bloodwork was negative and my pc dr. that is running some additional tests thinks the Sjogren's dx is correct but she wants to make sure there isn't anything else also since it often accompanies other things.

I, too, have Fibro and I also get the flushed face thing and was wondering what was causing that. I thought maybe it was because I'm 47 and possibly perimenopausal as I have crazy hot flashes at night. I also have some dizziness and weren't sure where that fit in either. I'm trying to figure out what is from what and could this just be some little virus or something that will go away, really hoping for that.

Feel better
Hi,
and thank you for responding. When my face first started turning bright red they thought I was having an anphylaptic shock. Well they were wrong and I ended up being admitted into the hospital for 5 days, and they still did not figure it out as to the reason behind the rash/flushing. My eyes are so dry the worst feeling and my tongue feels like sand paper and sometimes appears white. Im so very fatigued and I get swelling in my hands and feet as well. This redness has been happening to me for over 2 years now and its horrible. They thought it was perimenopausal too, but once again blood work proves differently. I'm hoping maybe others that been diagnosed with Sjogrens Syndrome may have experience this as well.... Sorry, and I hope you feel better too.

 
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