monitoring granulomatosis with polyangiitis

@ranjani1985
You pose a great question! I am not familiar with Granulomatosis with polyangiitis (GPA) but read it is a rare disease that can lead to other conditions making it important to treat it as soon as possible and learn how to avoid relapses.

You may have reviewed this summary already, but will add a link in case you haven’t. I want to point out information in the ‘treatment’ section that addresses your initial question.
- Granulomatosis with polyangiitis summary https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088

What is your experience with GPA?

anyone know best treatments for Granulomatosis with polyangiitis I have already gone through first line treatments with no good results and need to move forward with more complex treatment to get into remission.

@ranjani1985, I want to introduce you to @dmeyer004 who is moving through treatment of Granulomatosis with Polyangiitis on the way to remission. Also, @suska, @bobsconnect and @kga that have mentioned GPA in other discussions.

You also may want to look through comments on a discussion in the Autoimmune Support Group as you wait for others to comment:
- Connect Wegener's / Granulomatosis with Polyangitis discussion: https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/

Do you have GPA?

@dmeyer004 Welcome to Mayo Clinic Connect. It may be late for other members to respond tonight so I have put on this response the link to all the discussions on granulomatosis. Some may be old but you can probably find what you are looking for. Click on the link below and when the list comes up, click on ones that interest you.
https://connect.mayoclinic.org/group/autoimmune-diseases/
The members will find your query tomorrow and then you’ll hear from them. It may take a while to read everything, but you may find the needle in the haystack!

Hello @dmeyer004,

I've combined your discussion with an existing discussion titled:

"monitoring granulomatosis with polyangiitis"
- https://connect.mayoclinic.org/discussion/monitoring-granulomatosis-with-polyangiitis/

As @jlharsh mentioned, I'd like you to introduce you to @ranjani1985 who recently started a discussion on monitoring granulomatosis.

@dmeyer004, you mentioned you have gone through first line treatments with little success and must now embark on more complex treatments. Are these treatments ones that you have worked out with your provider? Is there something in particular you are comfortable sharing that has you apprehensive?

@JustinMcClanahan

Yes, all the treatments so far have been in coordination with ENT, Rheumatologist, Neurologist, and colorectal doctors. The attack has mostly centered around my mouth, nose and sinus area. Although I have had colorectal problems. What makes me apprehensive is that the doctors in the area where I was treated have voiced opinions that I need more experienced providers with this medical problem and referred me to Mayo in Jacksonville, but it seems I may have problems getting treated there although I have an appointment on the 13th for their second opinion. I may need to find a different provider in the area, but I also know with this disease time is of the essence.