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Old 10-16-2011, 08:50 PM
EE03 EE03 is offline
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Join Date: Sep 2006
Posts: 616
15 yr Member
EE03 EE03 is offline
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Join Date: Sep 2006
Posts: 616
15 yr Member
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Quote:
Originally Posted by en bloc View Post
The rheumy would be your best bet for a proper Sjogren's work up. Your ophthalmologist is correct that many with Sjogren's are sero-negative (closer to the 40% then 30%). The lip biopsy is the definitive test. Your ophthalmologist likely did a schirmer's test as well. I have negative blood work for Sjogren's, but a very biopsy lip biopsy result. The biopsy looks to see if lymphocytes have infiltrated the salivary glands. There is specific criteria as to the infiltration for a Sjogren's diagnosis. There must be at least one focus (an aggregate of 50 or more lymphocytes, histiocytes, and plasma cells) within a 4 mm sq area for a positive result. There are several doctors that can perform the biopsy (dermatologist, ENT, and oral surgeon are the most common). It's just as important to have someone with experience do the biopsy as it is the pathologist that reads it. It is not a common procedure so ask about experience. I will be honest, many times the biopsy leaves a small numb area in the lower lip and sometimes a small knot as well. They can be permanent. I have both, but they are not bothersome.

Sjogren's can explain the dry eyes, mouth, PN and many other things as well. I don't know if your ophthalmologist told you, but using a small amount of baby shampoo on a washcloth and washing around your eyes can help control the blepharitis.

If you have any questions, ask away. I'll do my best to answer. If you are on the east coast, Johns Hopkins has a good Sjogren's Center.
Thank you for responding. I've done the baby shampoo eyelash scrub, the steroid drops and gels, etc...and until he switched me to lodamax for a month along with the restasis, and then just restasis, I couldn't get away from the chronic never ending blepharitis. I still have some eye problems and pain, but at least the blepharitis is staying away now. This has been going on for a couple of years now. I hate that Restasis is the latest and greatest and most expensive and it only works as long as I use it, but it is working right now in that respect so I'm staying with it. I'll have more questions as I learn more so I'll take you up on your offer. Right now I have to get records together for the next rheumy appointment and see if he acts on it. I'd love to go to Hopkins but I'm sure my insurance would prohibit it. Do they send all the biopsies there for testing like they did when I had the punch biopsy for PN?
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