Hi everyone,

Iím Jen and I was diagnosed with GPA yesterday. Iím 41 and started experiencing symptoms in January of this year. My initial symptom was ďstrawberry gingivitisĒ that grew so fast that in a couple of weeks it almost covered my teeth completely. It was super painful and I couldnít eat solid food or brush my teeth. I had to take a month long medical leave from work as I was having every test possible done and was at the doctor almost daily. I had a full body ct scan, 4 gum biopsies, and countless blood tests, including c-anca, sed rate etc. Everything was clear so my doctors (primary care, ent, rheumatologist, oncologist, periodontist, pathologist and dermatologist) were all scratching their heads. I had of course googled strawberry gingivitis and found many articles saying it is for sure GPA. I put myself on an anti-inflammatory diet and my gums were 80% back to normal after two weeks. The doctors thought maybe it was an extreme allergy/sensitivity and signed me up for testing. It is scheduled for later this month. I guess I wonít be needing that.

I had a good couple of weeks back at work but then the quarantine happened so Iíve been working from home ever since. Mid-March I thought allergy season was hitting me harder than normal with severe sinus congestion and cough. My ďallergiesĒ continued to worsen until I called the doctor for help since the Flonase and Zyrtec wasnít helping at all. Over the course of a few weeks they had me try a bunch of different medications including singular, antibiotics and low dose prednisone but nothing touched it. I began having difficulty breathing because my nose was 100% blocked and the post nasal drip was making me cough uncontrollably. It was noisy when I was breathing. It felt like there was always something in my throat. With COVID-19 I had only been doing video visits, but my doctor decided I should be seen in person so I went to urgent care. They took an X-ray of my neck and thought they saw an abscess so they sent me to the ER in an ambulance. They did a ct scan there that was clear though. They decided to give me more antibiotics and send me back to the ent who helped with my gums. The ent doc put me on higher dose prednisone which helped. I asked if we could test one more time for GPA. She thought that was a good idea. The day after my blood tests, the rheumatologist I had been working with gave me the diagnosis (my c-anca was was way up from before, plus sed rate was up). That same day she got me in for more blood tests and ct scans to see how wide-spread it was. All my tests came back showing it is just in my nose at this point (not even sinuses - just nose). The rheumatologist said she would keep me on the high dose Prednisone and add methotrexate. This was in an email so I wrote back asking when I could get started with methotrexate. Waiting to hear back about that.

The last few months have been really difficult but I feel extremely lucky that my gums acted out the way they did. I think without them GPA wouldnít have been on anyoneís radar and Iíd probably not have a diagnosis for a long time like Iíve read others have experienced.

Sorry that was so long. It gives me great relief to know Iím not alone and I feel very fortunate to have found this forum.

Thats all for now but Iíll probably come up with a million questions!

Jen