View Single Post
Old 06-28-2017, 10:02 PM
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by en bloc View Post
There are MANY rheumatologists out there that WILL treat sero-negative Sjogren's (those with negative SSA/SSB). Most will require a lip biopsy to confirm the Sjogren's...which is a good idea to have done anyway. It will confirm/deny the Sjogren's whether you are sero-negative or positive.

However, make sure you have the biopsy done by someone with experience (often not enough glands are taken, or handling isn't careful), and also that the pathologist reading the biopsy is also experience and uses one of the reputable scales for grading the sample.

I suggest you seek out a place like Johns Hopkins Sjogren's Center or another teaching hospital with a Sjogren's Center.

You could have sero-negative Sjogren's, so treatment protocol could be the same as anyone else with sero-positive Sjogren's...which includes Plaquenil, steroids, and use of biologics at times.

Those with just symptoms of dry mouth/eyes and a negative biopsy would typically require only symptomatic relief for eyes and mouth. But it sounds as if your Sjogren's goes deeper and may even be responsible for your neuropathy and other health issues. So best to get the lip biopsy and confirm the Sjogren's and determine exactly where you are at in the disease process.
en bloc, thank you for comments... the reason why i am concerned about getting the lip biopsy is because of many stories about the pain and the aftermath numbness in the area. I do not mean to downplay what most of us here have been through but for years now, my body is just so stressed with all the issues i have. Right now, i have no access to big hospitals with sjorgrens center, except the Shands in Jacksonville and Gainsville. I will check if they have one. What is "biologics"? I do not want to take Plaquenil, i strongly suspect this is the one that triggered my neuropathy. And I should not be taking steroids because of my lung issues. What is the worst scenario if I just leave it at my current situation, no treatment, just manage my dry eyes which I have been doing for years now? Thanks again.
Idiopathic PN is offline   Reply With QuoteReply With Quote