New here! Questions about possible GPA

[Chelly84]

Hello! I have not been diagnosed with GPA, but was hoping to find some advice from those with experience. I have a rheumatology appt (1st one) coming up in two weeks and I’m not sure what to ask for/about or if I should ask about GPA at all based on my symptoms.

I’ve never had health issues. After running a race in August I developed some neck pain (not uncommon for me) followed by clearing my throat and a strange feeling near my larynx. Not painful, just different (?). ENT has scoped twice and no issues seen. I also had a PFT and my results were excellent. CXR shortly following the race showed no abnormalities. CBC, CMP, and CRP x2 all excellent.

My main concern is my nose. It looks like the bridge has dipped down slightly just below the bone over the last few years. I had rhinoplasty in 2008 and I do have a deviated septum. My nose drips often, but that’s pretty normal for me. I also get tiny amounts of blood on the tissue from time to time, which clears up on its own after a few days. Sometimes the septum gets dry, sore and cracked. This happens infrequently. I’ve always attributed this to dryness and my deviated septum. I don’t have crusting, major nosebleeds or sinus infections. I had a brain/head mri recently and the visualized sinuses were normal. I did have one small spot on the left frontal lobe but the neurologist was not too concerned about this.

My ears have been bothering me lately too. Some minor pain that comes and goes. No ear infections. I have been having issues with tmj and thought maybe this was the cause. Some minor joint pains that come and go, but nothing too noticeable or interrupts my day.

[Pete]

@Chelly84

Given that your symptoms are vague, it’s hard to know what’s really going on. I have some thoughts:
1. Tell the rheumatologist what you put in your post here. Give as much detail as you can about your symptoms—frequency, severity, duration.
2. You could have a different form of vasculitis—or a different disease entirely.
3. I have no experience with saddle nose deformity. I don’t know what the implications of rhinoplasty would be on saddle nose. (There are a few members who have saddle nose. Perhaps they’ll respond.)
J
I hope you get this sorted out before any significant damage is done.

[Chelly84]

Pete, thank you so much for your kindness and taking the time to respond. I will certainly explain all of my symptoms. Everything is very vague and I just haven’t been feeling myself for months now. I went from running several times a week to feeling “off.” I’ve lost quite a bit of weight, which the Dr thinks is related to anxiety. I had some masses on my liver that were incidental findings and that put me into a state of panic for a while. These turned out to be benign.

[chrisTIn@]

Hi Chelly,
Welcome here.
Pete has given you quite some information, I think.
I hope the rheumatologist wil be answering most of your questions soon, and that you 'll get everything sorted out.

The only thing I would like to add, is that weight loss is seen much in the onset of GPA.
I had also lost weight prior to diagnosis.

[Chelly84]

Thank you for providing additional information. When you lost weight, were you having additional symptoms?

[Pete]

I didn’t pick up on the weight loss statement. I lost about 25 pounds before I was diagnosed. That happened in about a month. So, continue to watch that and discuss with your doc. For what it’s worth, I gained back my weight loss plus about 20 more once I started 60 mg/day of prednisone. It’s been difficult to lose…

[chrisTIn@]

...When you lost weight, were you having additional symptoms?

Initially not. But later on I started having nosebleeds and crustings.
I was very tired all of the time, and I had so much joint pain that at some point I could hardly walk.

During treatment everything gradually went much much better!