Lupus with vasculitis

[Aleish]

My main diagnosis is GCA Vasculitis and probably PMR vasculitis, but it seems that I might have Lupus. My GCA is good. I’m down to 4 mgs prednisone. I had over a year of Actemra biologic shots but had to stop because of dividiculitis. My body pain is just unbearable and certain markers for possibly lupus are sometimes elevated. I really have the body pain symptoms of polymyositis. I need to get back on another biologic and in the states the biologic has to be approved for the specific disease.

The doc is trying to get me on Orencia. Just curious if anyone has a similar story.

[KellyInTexas]

Yes, sort of.

I have APS and possible lupus Vasculitis.

The jury is still slightly out on the Vasculitis diagnosis.

I’m currently on Rituximab, which can be a biologic of choice for Vasculitis and lupus. I have to wonder why this one is not being considered? Is your rheumatoid factor elevated, by chance? This could help the insurance process. Mine is sky high and RA is starting to develop as well.

There is a health unlocked forum here PMR GCA UK.

One of the admins has lupus. @PMRpro

You haven’t tapered too quickly I’m sure? Only by a quarter mg per taper, right?

PMR GCA are kind enough to take me under wing right now just to teach me about steroids. (I’m having to self inject right now for a bit. ). They are an incredibly well run , disciplined, and educational forum.