Author Topic: Need a primary in Illinois  (Read 761 times)


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Need a primary in Illinois
« on: January 16, 2019, 10:49:43 PM »
Hey, all.
Got diagnosed last fall. Looks like I may need to find a new primary. My current one has repeately (and incorrectly) tried to diagnose me with RA but doesn't know about Sjogren's and doesn't seem to care enough to read up on it.
I'm in the Fox Valley area. Anybody have any clues about primaries out here in no man's land who know anything about SS?

Joe S.

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Re: Need a primary in Illinois
« Reply #1 on: January 16, 2019, 11:48:34 PM »
Try to find a specialist at a teaching hospital. Also study up yourself. Every time you see a doctor bring your advocate with you. I bring my wife. good luck.
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Re: Need a primary in Illinois
« Reply #2 on: January 17, 2019, 08:15:17 AM »
He may know more than he lets on...

I say that meaning that he is actually doing you a favor, having the RA diagnosis makes access to biological therapeutics possible that have been proven beneficial in Sjogrens.  Rituximab, Orencia, etc.  That way, treatment will not be off label and covered to the degree your insurer/plan allows.

What's more, several of the therapies currently being trialed for a Sjogrens indication will likely be approved for RA first.  So, you could potentially have access to these medications faster with that diagnosis/code.

Most folks here suffer with various forms of arthralgia related to their lymphoproliferative disease.  Regardless of what diagnosis you have it coded as, these medications certainly work that direction...

Just a thought.

- Mark
« Last Edit: January 17, 2019, 08:17:06 AM by markt »