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Sjogrens Syndrome journey

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bridget1970
bridget1970

I have been officially diagnosed with SSbfor 2.5 years. I started with foot numbness, and shooting pain approx 6 yrs ago. PCP kept testing HGB A1C for diabetes. Finally went to new PCP who did an autoimmune panel. ssA and ssB was elevated also ANA and CRP. Started on plaquenel, prednisone cellcept. Started on gabapentin for the neuropathy pain. Things were pretty consistent for 2yrs until my rheumatologist started Rituxin infusion. Now I’m not sleeping, have terrible neuropathy pain, and joint pain. I’m am hoping posting here might give me some new treatment ideas, and possibly help me feel not so alone. No one seems to understand bc I look fine on the outside. I’m 48 and feel 84. I appreciate any ideas and welcome and support!!

0 likes, 4 replies

4 Replies

  • bNICE2_ME
    bNICE2_ME bridget1970

    Posted

    Perhaps Enbrel or Remicade coukl be a better option than Rituxan? That's what I read, but you should certainly speak to your doctor.

    • bridget1970
      bridget1970 bNICE2_ME

      Posted

      Thank you for the response bNICE2me. This is why I posted on here, to offer suggestions to my rheumatologist. I appreciate your feedback!
  • Megheart
    Megheart bridget1970

    Posted

    Hi Bridget,

    I know this suggestion is not what you asked, however did you ever write to your previous GP/PCP to say that an autoimmune panel was done subsequent to you seeing him/her and what it showed?

    It's like they sometimes get stuck in one groove and don’t look laterally. BTW do you have Diabetes also which could explain your previous doctor getting stuck with the HGB A1C testing only?

     

    • bridget1970
      bridget1970 Megheart

      Posted

      Hi Meg

      No I did not go back to my old PCP. I am just relieved I know the cause of the pain. I do not have diabetes. I think that diabetes was the only reason she could think of which caused neuropathy. Just my thought

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