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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  • That's a common clinical course when it's not caught early (goes untreated.) It also really sucks :(

    iVig is what my boss did briefly and it helped, but with the stroke/vascular, she may be a poor candidate. Hopefully someone else can chime in. (What state are you in? I almost suggested my doctor, but duh...)

  • (chemo drugs can equal nerve issues. I'm sure you know that but just in case...)

  • Don't have any advice as I have never been there, but tell your mother I'm praying for her, I am 72 am dealing with Sjogren's and fibromalgia, the autoimmune meds damaged my vision also.

  • Thx for prayers. Which med do you think damaged your vision?

  • IVIG was used for Sjogrens + ganglionopathy specifically?

    She's in LA area in California.

  • Welcome to the group. I will rely on others to give you information because I do not know anything about what your mother is having to deal with. My best to both of you.

  • Plaquanil, but then I was on methatrexate and cell cept now. The first one showed a pooling below my eye ball on the xray?...he said it was toxic, then last visit it was my peripheril vision that was damaged. All can do damage but I had cronic pancreatis and sun sensitivity that caused a poison oak like rash that was treated by cortizone shots, even with them it lasted 2weeks, itiching.

  • I am learning that, didn't know it.

  • I also have Sjögren's and sensory neuropathy. I also have a hard time walking any distance as I am off balance so bad. I have suspected vasculitis but no dr has specifically brought i up. They always wonder if I am having mini strokes and always say no when that testing is done. I was in hospital for 12 days in January and they also put me in iv steroids while I was there. Now I'm only on 5 mg a day. They have gave me no treatment other than the prednisone and I continue to decline daily. I wish your mother best of luck and hope they figure something out for her. If they do please let us know as I am very interested in your moms case as we sound almost identical. I will let you know if they do something that helps me as well

  • I have also had several mini strokes and lots of nerve related issue including trigeminal neuralgia....and the theory that sjogrens was causing vasculitis was also discussed as a possibility. Other than prescribing horrible nerve drugs with high dose steroids, my neurologist does not know what to do. I am very stressed about it as I have seen definite changes to my memory, speaking, etc. I am only 41. I am sorry. I don't have any answers but do relate