Treatment for CSS

I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations or any problems in terms of side effects/infections.

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  • I do know of one or two diagnosed with GPA who have had RTX plus Methotrexate alongside the RTX.

    You say you have a cross over of GPA and CSS , many of the symptoms of CSS can be very similar but with CSS the Eosinophil's are raised.

    Refractory CSS can be very difficult to treat and manage even by the best hospitals. Hopefully you are being seen by one of the well known hospitals.

    The VUK hard copy newsletter has been sent out today by post and there are two articles about CSS (EGPA) in this edition.

    Best wishes

    Susan

  • Hi I have CSS and take metatrexate im just increasing my dose and it seems to be helping. I have nerve damage in my hands and feet. I hope it works for you too X ps how do younger a copy of the news letter I would be interested in reading the article Xx

  • You can become of a member of VUK and we can put you on the mailing list to receive a hard copy, or the pdf version will be available early next week on the VUK website. The postal version was posted yesterday so should be on doormats tomorrow.

    Susan

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