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Sjogrens Topics => Living With Sjogren's => Topic started by: sunflower on June 15, 2020, 12:42:15 PM

Title: Retest autoantibodies, lip biopsy?
Post by: sunflower on June 15, 2020, 12:42:15 PM
Hello all,

I tested negative to both back in 2015.  As symptoms emerge and worsen, is it worthwhile to do a retest?

When I had my lip biopsy, the doctor offered to retest if necessary.

I realize it's the treatment not the diagnosis that is important, but I think I would get more consideration (better care?) from doctors if I actually had a diagnosis.  Maybe I'm wrong...

Title: Re: Retest autoantibodies, lip biopsy?
Post by: Robi5 on June 15, 2020, 05:22:08 PM
Sorry to hear about your troubles, we definately feel your pain.

I‘m a bit new to all this as I have was offically diagnosed 1.5 years ago after a severe flare.  I at the time didn’t even know what Sjogrens was until a blood test report I saw mentioned it as a suspicion and to do further investigation.

I would say that getting diagnosed is key to better care (or any care), so I would say definitely get tested again.  I think if you get tested when you are in a flare state makes it more likely that your serum and other tests will show positive, as opposed to if your disease is in more in remission.

I would get your family doctor to refer you to a specialist (Rheumatologist) that they know will do their due diligence and leave no stone unturned. 

Even if your tests show negative, it doesn’t mean you don’t have Sjogrens, but I’ll let others chime in who know better.  My tests were positive across the board, but I know thats not true for everyone.  Get a blood test with an ANA test for sure.
Title: Re: Retest autoantibodies, lip biopsy?
Post by: meirish on June 20, 2020, 09:43:27 PM
It is such a quandary isn't it. I had negative tests for years. After having health issues since 1964 I was diagnosed, sort of, by my rheumy. She was the first one who ever considered that I might have had Sjogrens. 
she told me to get a lip biopsy. My ENT of 15+ years said "no way" did I have Sjogrens. I said loudly do the biopsy. He called me 4 days later and told me it was positive. I was totally surprised. This was 2003.

In 2005 I was in a Sjogrens study at the University and they did a lot of testing plus the blood works. All my blood work was normally then and my eyes were very dry plus hardly any saliva. I had a dry mouth for years and only had to have all my teeth pulled by 2004 and wore dentures. Such a crazy disease.

If it was me I would have blood work again and see how it was. If it is negative I would wait another year or so and then maybe do the biopsy again. I really would avoid the biopsy again if possible just because it hurts and if negative again would be disappointing.

Just to let you know what a couple of years later mtg blood was checked again and it had converted toy negative again. My immunologist said once positive blood always a Sjogrens. One can have Positive blood with no symptoms and can have negative blood with a ton of symptoms. This is why it is really the best to get treated for comfort. If a person is having symptoms that demand a med such as Methotrexate or Cellcept most doctors desire a positive test of some type. Plaquenil for aching and inflammation or fatigue, etc doesn't need positive blood work. This med it the first in line med for Sjogrens symptoms. Good luck. Keep us posted. Meirish
Title: Re: Retest autoantibodies, lip biopsy?
Post by: sunflower on June 24, 2020, 04:00:47 PM
Thanks for your reply.  Not that I need medication at this point (thankfully) but a positive test would mean doctors would more likely take it into consideration, especially since my specialists list is growing.

Flipping back and forth between + and - is really odd.  I'm glad you mentioned that. 

My lip biopsy wasn't a huge deal for me so I'd be willing to redo it since the doctor offered.  Maybe if I have a significant change in symptoms. 
Once positive, always SS?  Interesting.

Title: Re: Retest autoantibodies, lip biopsy?
Post by: meirish on June 24, 2020, 07:07:13 PM
Yes, once positive always a sjogrens. WE might have times with no symptoms and we could be negative with no symptoms but it is not to be assumed that we are cured. Usually once autoimmune we wander around in the wilderness with migrating up and down symptoms. When we go from negative to positive it is called converting.... back and forth, etc.

I have 5 autoimmune diseases and haven't had blood work for a couple of years. I have so many symptoms that it hard to tell whether something is coming or going. The one test I have the most frequently is the anti striated muscle blood work to check on how my Myasthenia gravis is doing. Take care. If we sort of accept and roll with the symptoms it helps keep us sane.
Enjoy the good days and get your blankey and teat and rest in recliner on the bad days with the meds we need. Meirish