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Old Today, 01:18 PM
 
518 posts, read 168,025 times
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I had autoimmune inner ear disease four years ago, but got it into remission within 4 months of onset with immunosuppressive meds. About two and a half years ago, I stopped the meds .... and happily the remission has continued. My otoneurologist was very pleased with this result and is convinced that I will have no more issues with this rare disease.

I thought my autoimmune disease worries were behind me, but now as part of continued treatment for NSC lung cancer, my oncologists are considering immunotherapy. However, given my history, they wanted me to get a full work-up for autoimmune disease before starting the treatment.

I honestly was not expecting any positive results from the subsequent blood tests since I have never had any symptoms of autoimmune disease (except for the previously mentioned hearing loss). But, oddly, I did get positive results. The Sjogren's antibody test (SS-A) came back at 6.5 where normal is less than 1.

Also, the antinuclear antibodies test came back positive at a 1:640 titer and the pattern of the antibodies was described as “nuclear, fine, dense speckled.”

I was negative for all other autoimmune diseases tested (lupus, rheumatoid arthritis and others) Also, the test for a second Sjogren’s antibody (SS-B) came back negative.

So, I am feeling really confused. Apparently, someone can test quite positive for a Sjogren’s antibody and yet not have any symptoms (no dry mouth, dry eyes, etc,) because that is exactly my situation. Do this mean I actually have Sjogren’s and am unaware of it? Or do I not have it and am predisposed to getting it?

I know that my grandmother had Sjogren’s for many years and was quite symptomatic and that Sjogren’s tends to run in families. So maybe I have some elements of Sjogren’s, but not the full-fledged disease? I’m feeling really befuddled here.

Tomorrow morning, I will be calling my rheumatologist back to set up a follow-up consultation where hopefully he will shed some light will be shed on all this.

In the meantime, if any one has some pertinent knowledge and experience, please feel free to enlighten me!
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Old Today, 02:08 PM
 
Location: on the wind
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Haven't had to deal with autoimmune diseases so can't comment on those specifics, but didn't you just finish your chemo course? Plus, you just finished your radiation course too. Both can throw your "normal" immune responses for a loop, at least temporarily. Chemically, you are probably still a bit of a mess. This test result could be an outlier. I wonder if waiting and re-testing in another month or so might show that you are transitioning back to your more "normal" once again. If you aren't showing any symptoms could be you are on the cusp because of your recent treatment...but end up never falling over it.

Last edited by Parnassia; Today at 02:46 PM..
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Old Today, 08:23 PM
 
518 posts, read 168,025 times
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Quote:
Originally Posted by Parnassia View Post
Haven't had to deal with autoimmune diseases so can't comment on those specifics, but didn't you just finish your chemo course? Plus, you just finished your radiation course too. Both can throw your "normal" immune responses for a loop, at least temporarily. Chemically, you are probably still a bit of a mess. This test result could be an outlier. I wonder if waiting and re-testing in another month or so might show that you are transitioning back to your more "normal" once again. If you aren't showing any symptoms could be you are on the cusp because of your recent treatment...but end up never falling over it.
I don’t know about radiation, but I have heard that sometimes people with autoimmune disease experience a remission during chemo since chemo is immunosuppressive — exactly what you want with autoimmune disease. In fact, my rheumatologist was worried that the chemo would lead to a false negative, not a false positive.

I have been reading a bunch of other stuff that is giving me hope though. Apparently, a high ANA titer and even positive results for specific antibodies are not that meaningful without symptoms. Hope this is the case ...
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