New VA Rheumatologist's comment and treatment plan

LisaDLisaD Member New Member
Hi everyone,
I'm new here and could use your help. I've been seeing a civilian rheumatologist but recently was asked by the VA to see a VA rheumatologist.  At the first visit,  after having labs done,  she wants to take me off of all meds since I show no signs of inflammation and WBC is now in a normal range.  My ANA is still positive at 320 which has gone done since I first started on meds with my civilian doc. Going off of all meds? Does that sound right to you? She also told me that lips does not cause pain in the body. I'm beside myself because it took a long time to get to a decent place with my pain and flare ups. Help?


  • cyndyvcyndyv Member New Member
    I too was seeing a VA rheumatologist who knew less about lupus than I did. When my lupus got out of control I paid to see a civilian. Luckily the VA started a program where if you live 40 miles or more from any VA center they would pay for you to see outside providers. If you live 40 miles or more from any VA center I highly recommend doing this. Otherwise, you need to put your foot down and demand better care. And hope that helps. Having been in your shoes, I feel for you. Good luck.  Oh, ask about Benlysta. I know the VA has it because I get it from them. I have been using it for 7 years now & I love it. It is a self injectable (which takes getting used to). Which VA do you go to? 
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