Losing the bridge of my nose

[zizzcat]

Hi everyone, hope you are having a nice weekend.

Ive had a perforated septum for many years now.
Have been diagnosed with heal diffuse immune syndrome
and mesenteric vasculitis. About 4-5 months ago the rheum
docs reduced my aza from 200-100 and eliminated plaquenil.
I have had a lot of upper and lower respiratory problems.

The ulceration in my nose became active the very first week
that the meds were decreased. My nose is being eaten away
from the inside and there's not much cartiledge left. It might be
a week from now or a month. Maybe the new rheumatologist
whom I see in late June will save the day and increase my aza
again and all will work out.

Frankly, sorry for being crude, but sometimes it's hard to give
a rat's ass anymore. This is all simply insane.! There is so much
that I can't do anymore. I am once more on pain meds for my r
wrist r elbow, r lung and as of yesterday, my left shoulder. I
have a husband who is sick as well and im praying my way through
it all plus not smoking now for a month and a half.

How do you all keep on going?
Does any of this sound familiar?

[Pete]

Sounds like active wegs with the saddle nose and joint pains. Any chance you can see the new rheumy sooner - perhaps if there's a cancellation that you could take advantage of? Two months is too long to wait when you're having acute symptoms.

[Middlesista]

Congratulations on quitting smoking - not easy to do esp with everything else you have going on.

It is sometimes hard to get in to see a doc but you have good reason to. Truly - insist on treatment now to prevent further damage. Your disease has to be stopped in its tracks now as much as possible - call the doc, don't let them take your 'fight" away. What do your labs look like? I know it is hard to see a new doc or get an appt but they can at least do a phone consult and redirect your med regime. You are worth this -

[drz]

Have you contacted the doctor about your symptoms? I know it is hard to get regular follow up appointments with my treating and consulting Weg doctors, but both have assured me if I have a flare they will see me ASAP. They have too so far. They will also order extra labs if my symptoms are increasing and causing me concern but not yet at critical stage. And some times a med change or addition if it will help.