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General Questions About Sjogren's Syndrome

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Sjogren's Syndrome
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Posted 1/29/2012 4:24 AM (GMT 0)
I have RA.  I don't know if I have Sjogren's or not. My Rd asked me if my eyes were dry and I said yes.  She said to use ey drops, and that was the end of the discussion.  The last couple of months, I have really had a problem with dry mounth.  My dentist told me my mouth was as dry as the Sahara!  Now I am having all kinds of expensive dental issues.  He said the lack of saliva in my mouth promotes tooth decay, etc. I started using Biotene mouth wash and that helps a lot.  I use a sinus wash twice a day, and that helps the dryness in my nose.  I use eye drops when my eyes get dry and itchy.  My worst symptom is my dry mouth, though.  I tried to lick an envelope the other day and it didn't work.  Not enough saliva to do it.  I don'tknow if this is from my RA, my meds or something else, like Sjogrne's.  Any ideas???
Posted 1/29/2012 6:10 AM (GMT 0)
Your rheumotologist is usually the one to diagnose and treat dry mouth & eyes if s/he suspects Sjogren's, although most dentists know a little bit about Sjogren's.

I would give the rheumy's office a call to see what they recommend - they should do blood tests which will help confirm a dx.
Posted 1/29/2012 7:43 AM (GMT 0)
Thank you for the response.  I think I will wait until my appt in March.  I have been dealing with it for some time, now, and have found some good coping strategies.  Just curious as to the symptoms.

Thanks,

V

Posted 1/30/2012 4:13 AM (GMT 0)
Make sure to get your eyes checked by an eye doctor, for dryness, they
can do this in eye doctor's office and then you can get drops that will help most with
sjogren's from your eye doctor, restasis is a prescription eye drop that can help the most,
also blink eye drops over the counter ...Your RA doctor will do blood test for sjogren's
and go from there...you would then be sent to and ENT or another doctor for the lip biopsy
and this is painful and unpleasant...I sure hope you won't need that...ice cubes help the most with pain from the lip biopsy...
I did all this merry go round of doctor's two years ago and my lip biopsy was inflamed, but not
enough for a true dx from the lab. but my RA doctor says it's Sjogren's just early stages...

You can also get eye plugs place in your tear ducts to help keep your eye moist, I have upper and
lower eye lid plugs...they do hurt a little the first time they are placed in, but they help the most...
I go thru 2 sets of eye plugs a year...normally most people can keep them in for longer than one year...
My eye's just get that dried out.......(so wish I was normal, but then how would my life be so exciting, eh???)
Posted 3/30/2012 9:23 AM (GMT 0)
Vannie, I have similar problems but the blood test came back that I do not have Sjogren's. I have many of the symptoms. My dentist has me using Biotene tooth paste and mouth wash. I use OTC eye drops 24/7. I have numbness and tingling in my feet and I get frequent nose bleeds and use saline solution to moisturize my sinuses. I also have other symptoms.

I have fibromyagia and the rheumy, foot doctor and internist are all saying they must be from the fibro but they are not fibro symptoms.

Has the blood test ever been wrong for any of you and then you received an official diagnosis?
Posted 5/23/2012 3:13 AM (GMT 0)
I have had a lot of pain since i was in my twenties. i can remember being a youngster and having problems sqeezing things because my hands would feel weak or would hurt i didn't think too much of it at the time. It took most of my twenties and thirties to convince doctors that i really was having pain! I am now 41 and was diagnosed with sjogrens about 4 years ago. Sometimes pain is in joints, sometimes muscles, sometimesin the bones, sometimes my head. IT can be sharp, pulsating, or aching. I have experienced it moving all over my body up to 100 times a minute and each place can be a different type of pain, but very significant pain. However its when it settles in one area for long periods of time that it gets hard to cope with especially if the area is my head or back. I was prescribed placquenil and naproxen. if it is helping at present, I would hate to know the pain iI would be in without it. went to 2 different rhuemy docs both tell me they don't want to give me anything stronger because I will get worse as I get older and will need it then. I have episodes that when the pain subsides a little then i have what I call body fever which I guess is like hotflashes that can last a few min to an hour. Most days i experience extreme fatigue that really upsets my life. I have gotten to the point that a few hours out shopping with my daughter can mean a few days of bedrest. I want to enjoy my family. I hope to have grandchildren someday. Also, if I try to diet this seems to make it even worse if i loose any weight. Has anyone out there noticed this problem with their ss?

Post Edited (understandingus) : 5/22/2012 9:18:50 PM (GMT-6)

Posted 5/23/2012 3:58 AM (GMT 0)
Please go to see a pain management specialist. You need to be here for your family now and your rheumy's obviously are clueless. I admire you for living with this day after day. cool
Posted 5/23/2012 12:26 PM (GMT 0)
Thats kinda what i've been thinking about doing. I mean hey it has gotten so much worse this past year when will it be bad enough for them to help me.
Posted 5/23/2012 11:19 PM (GMT 0)
I think the specialists I go to are thinking about how to help us but not about managing my pain. Recently at a check-up with my surgeon he said "What are you doing for pain?" I told him what my Internist is prescribing and he said good. I was surprised as he sends me home from the hospital after major surgery with a prescription for 20-30 pain pills. I'm glad I have a good Internist that prescribes more than 30 pills at a time.

What's the worst thing that can happen when you go to see a new doctor anyway. She or he could say no but I doubt that will happen.
Posted 7/21/2012 3:58 PM (GMT 0)
I use the Biotene mouthwash and also their gum. Walmart seems to be the cheapest for the gum and Costco for the mouth wash. The nice thing about the gum is that you take it with you. When you are out and you feel like your mouth is the Sahara Dessert you can take a piece of gum and chew away. It really helps. If you can take a sip of water first it is even better. My 4 1000mg fish oil and my 3 1300mg Evening in Primrose help with the dry mouth and the dry eyes.

I mix Olive oil, vitamin E and Evening in Primrose oil together and rub it into my face and eyelids before going to bed. I put this oil on my finger and coat the inside of my nose, as far as I can reach with this oil. I also use eye drops or eye grease right before I close my eyes to go to sleep. Every little bit helps us to maintain a fairly normal life.
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