Sjogren'S Syndrome

[twe0708]

If you test positive for Sjogrens Syndrome, what other tests should you have done on top of the SSA and SSB. Should you check for damage to other parts of the body due to Sjogren's Syndrome? Ex: Does it cause serious damage to any organs or other body parts. Right now I am experiencing dry eyes and mouth. Also having a problem with my gums receding. Thanks!

[Gemini]

If you test positive for Sjogrens Syndrome, what other tests should you have done on top of the SSA and SSB. Should you check for damage to other parts of the body due to Sjogren's Syndrome? Ex: Does it cause serious damage to any organs or other body parts. Right now I am experiencing dry eyes and mouth. Also having a problem with my gums receding. Thanks!

I also have Sjogren's Syndrome and it's pretty severe. However, it can be managed well enough but can require a lot of maintenance. I would recommend going to the dentist four times per year for cleanings instead of just twice. This has made a large difference in my dental health. I also have gum recession and have had numerous dental procedures done over the years to save my gums and teeth. It's deceiving because they look great when I smile but I attribute that to keeping on top of things. I am lucky to have 2 dental plans so I am regular at the dentist!

As for other testing, I am unaware of any additional things you would want to do. Sjogren's can cause other problems with various body organs but I don't worry about that as I am not having any other problems. If I feel good, I don't concern myself with it. I do pay extra attention to my eyes and teeth/gums but that's about all.

A little warning......doctors know even less about Sjogren's than they do about Celiac. Autoimmune diseases are a crap shoot....you have to pay attention to what is normal for you and not rely so much on what the medical profession thinks. They love to push medications and you will find that Sjogren's sufferers do not do well taking many meds as they dry out your mouth and eyes further. There really isn't any treatment for it, you just manage it. I would recommend using Biotene mouthwash

as it contains the enzymes present in saliva that we don't have enough of. It helps to protect your teeth against decay.

Good luck to you...Sjogren's, in my opinion, is worse than Celiac. The

dry mouth and eyes are a pain in the butt!

[twe0708]

I also have Sjogren's Syndrome and it's pretty severe. However, it can be managed well enough but can require a lot of maintenance. I would recommend going to the dentist four times per year for cleanings instead of just twice. This has made a large difference in my dental health. I also have gum recession and have had numerous dental procedures done over the years to save my gums and teeth. It's deceiving because they look great when I smile but I attribute that to keeping on top of things. I am lucky to have 2 dental plans so I am regular at the dentist!

As for other testing, I am unaware of any additional things you would want to do. Sjogren's can cause other problems with various body organs but I don't worry about that as I am not having any other problems. If I feel good, I don't concern myself with it. I do pay extra attention to my eyes and teeth/gums but that's about all.

A little warning......doctors know even less about Sjogren's than they do about Celiac. Autoimmune diseases are a crap shoot....you have to pay attention to what is normal for you and not rely so much on what the medical profession thinks. They love to push medications and you will find that Sjogren's sufferers do not do well taking many meds as they dry out your mouth and eyes further. There really isn't any treatment for it, you just manage it. I would recommend using Biotene mouthwash

as it contains the enzymes present in saliva that we don't have enough of. It helps to protect your teeth against decay.

Good luck to you...Sjogren's, in my opinion, is worse than Celiac. The

dry mouth and eyes are a pain in the butt!

Do you know how this is diagnosed? Is there blood work done or do they tell just by the symptoms you have? I read on the Sjogren's website that they don't do blood work.

[Gemini]

Do you know how this is diagnosed? Is there blood work done or do they tell just by the symptoms you have? I read on the Sjogren's website that they don't do blood work.

Have you been tested for Sjogren's? I got the impression from your first post that you may have already done that?

There most certainly is blood testing for Sjogren's and they are the 2 tests you mentioned in your original post.....SS-A and SS-B. These are antibodies that may show in your blood, just like in Celiac Disease. If you test negative, it doesn't rule out Sjogren's....just the same as in Celiac. The next step would be to do a biopsy of a salivary gland in your lip. I tested flammingly positive for Sjogren's from the blood work so declined the additional biopsy. I am extremely serio-positive in all my autoimmune problems, which is good because then I didn't have to undergo any biopsies.

One of the biggest "gotcha's" with Sjogren's is whether or not you can swallow a piece of bread without drinking any liquids. I cannot do this or I will choke. Food will become lodged in my esophagus if I try to swallow any without liquids. It's one of the unscientific but telling symptoms of severe Sjogren's.

Sjogren's can also affect your kidneys, lungs and other organs but, like I said, I am having no other symptoms of anything bad so don't dwell on it. You can become very entrenched in autoimmune problems or let it scare the crap out of you if you obsess about testing. If you feel OK and are managing the problem well overall, damage should be kept to a minimum. Follow the diet, don't knowingly cheat or take big risks and things will improve. That has been my experience.

If you have any other questions, feel free to ask away!

[twe0708]

Have you been tested for Sjogren's? I got the impression from your first post that you may have already done that?

There most certainly is blood testing for Sjogren's and they are the 2 tests you mentioned in your original post.....SS-A and SS-B. These are antibodies that may show in your blood, just like in Celiac Disease. If you test negative, it doesn't rule out Sjogren's....just the same as in Celiac. The next step would be to do a biopsy of a salivary gland in your lip. I tested flammingly positive for Sjogren's from the blood work so declined the additional biopsy. I am extremely serio-positive in all my autoimmune problems, which is good because then I didn't have to undergo any biopsies.

One of the biggest "gotcha's" with Sjogren's is whether or not you can swallow a piece of bread without drinking any liquids. I cannot do this or I will choke. Food will become lodged in my esophagus if I try to swallow any without liquids. It's one of the unscientific but telling symptoms of severe Sjogren's.

Sjogren's can also affect your kidneys, lungs and other organs but, like I said, I am having no other symptoms of anything bad so don't dwell on it. You can become very entrenched in autoimmune problems or let it scare the crap out of you if you obsess about testing. If you feel OK and are managing the problem well overall, damage should be kept to a minimum. Follow the diet, don't knowingly cheat or take big risks and things will improve. That has been my experience.

If you have any other questions, feel free to ask away!

Thanks for your help! I haven't been tested but just recently contacted my dr. about some symptoms I have been experiencing. Dry mouth (feeling dehydrated for over a year even though I drink plenty of water), dry eyes, sometimes feeling like there is a cotton ball in my throat and have experienced this at times at night while sleeping - as if my throat just dried up and it makes it hard to breath just for a moment. Weird! Oh and problems with my gums starting to recede. Thanks again!

[Gemini]

Thanks for your help! I haven't been tested but just recently contacted my dr. about some symptoms I have been experiencing. Dry mouth (feeling dehydrated for over a year even though I drink plenty of water), dry eyes, sometimes feeling like there is a cotton ball in my throat and have experienced this at times at night while sleeping - as if my throat just dried up and it makes it hard to breath just for a moment. Weird! Oh and problems with my gums starting to recede. Thanks again!

Your welcome! Sounds like you may have Sjogren's but it can be as hard to diagnose as Celiac. Go with your instincts and if you have dry eye/mouth symptoms, it probably is. Gum recession is a BIG symptom, if you otherwise take good care of them. I have pretty bad recession and with my existing issues, my dentist will retire on my business alone!

[CMG]

If you test positive for Sjogrens Syndrome, what other tests should you have done on top of the SSA and SSB. Should you check for damage to other parts of the body due to Sjogren's Syndrome? Ex: Does it cause serious damage to any organs or other body parts. Right now I am experiencing dry eyes and mouth. Also having a problem with my gums receding. Thanks!

I'm in process of being tested for Sjogren's. My SS-A and SS-B were negative, but my rheumatologist still thinks I have it because of symptoms. I went to the eye doctor for testing of tears. First, he put dye in my eyes so he could watch and time how long the tear film protects the eye before it dissipates. One blink should protect for 10 seconds. He then put thin paper strips just inside my lower lids and left them for one minute. In one minute the tears produced should saturate the entire strip. Based on these two tests, the doctor determined the severity of dry eye. Next I went to an ENT for salivary gland biopsy. She made a small cut on the inner side of my lower lip and cut out about 5 or 6 salivary glands, then stitched the incision. (I had this done a week ago, and it's still really sore.) The lab looks for indications of chronic inflammation in glands sampled. I'm still waiting to hear back on next steps from the rheumatologist, but she did say that she will want more blood tests (I don't know if these are for Sjogren's or other autoimmune conditions - we're trying to figure out multiple issues) and that she probably will want me to have a scalp biopsy. I have had significant hair loss, and apparently that is consistent with Sjogren's as well as some other autoimmune conditions.