First time posting to the group

Cytoxan is a type of chemo drug that also suppresses the immune system. It also helps treat CLL and vasculitis which is why I think they are leaning this way. But it's pretty damn toxic and I worry if my mom (who is 73 and pretty frail) can tolerate the potential side effects.

If we skipped Cytoxan and went straight to cellcept, we were told that it could take 3-6 months to see results and that's IF Cellcept even worked for her at all, which is a long time to wait if she is getting worse. Bottom line is that she is progressively getting worse, in terms of her hands and feet usage, so we worry that if we move straight to Cellcept it won't be strong enough to jump start the immune system.

Does anyone know anyone that has experienced Sjogrens + ganglionopathy and how they were treated?

Does anyone have experience with Cytoxan or Cytoxan + Cellcept treatments?

I tried reaching out to a few Mayo Clinic doctors to see if they have experiences we can draw from but they haven't replied.

Thanks for your help!

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  • I've read through your post. I believe herpes simplex might have been a contributing factor to my Sjogrens . I don't have any experience with ganglionopathy. Your mother is blessed to have you. Praying for you.

  • Definitely following I used to get fever blisters so bad. My granddaughter gets them oh please Lord I pray​ she never gets this.She just had a bad one.