Hello and Happy New Year! I'm Alex Lach and my fiance, Brittany, was diagnosed with GPA in October 2018. I've been so inspired reading all the posts on this forum. It feels amazing to have a community of so many people that understand what we're going through! At times it feels really hard to explain to family and friends what this diagnosis entails.

Brittany and I met in college six years ago. I found a job in the oil industry in Houston and when Brittany finished graduate school she joined me in here. Before her diagnosis she was working for a NASA contractor. Right now things are in limbo with her work. Her short term disability just ended so she's trying to determine if she'll be able to work from home part time, go on long-term disability, or go back to work full time. The biggest part of all this is figuring out how to maintain insurance coverage, since her current plan has been a literal life-saver.

Right now we're on the journey of figuring out long-term treatment (i.e. rtx or aza) and trying to understand this strange disease. I'm really looking forward to talking with people on this forum about the science of GPA as well as the latest research into treatment!

The full "origin story" of Brittany's diagnosis and treatment is below, but here's the tl;dr: Brittany coughed blood, went to hospital, got abx and left hospital, went back to hospital, had positive ANA and ANCA, got prednisone, left hospital, got 4x rituximab, and now is tapering prednisone and taking Imuran.

Brittany has had a history of asthma and allergies and got allergy shots in early/mid 2018. In September 2018 her eyes became bloodshot. After seeing an ophthalmologist she was prescribed steroid eye drops, which cleared things up for a while, though it came back by the end of the month.

In early October Brittany was traveling to Arizona for work and she coughed up a spot of blood after a workout. Two days later she was back in Houston and it happened again but with more blood. She went to a clinic. They sent her to the ER and I left work to meet her. At this point she was coughing up a scary/significant amount of blood. She was referred to St. Lukes hospital and admitted that night (October 4). Over the next six days doctors ran every test under the sun while I stayed with her in the hospital. Her ANA came back 1:2560 with a nucleolar pattern. There was trace blood and protein in her urine. Her MPO and PR3 came back normal. GBM normal. C3 and C4 normal. Sjogren's normal. She was treated with IV antibiotics and showed gradual improvement. Bronchoscopy on October 9 showed only old blood in the lungs in the areas they checked. On October 10 they released her with oral abx. At this point the cough was gone and we thought our ordeal was over...

The next day (October 11) she saw a rheumatologist, Dr. Kalpana Bhairavarasu, at BCM, who recommended repeating lab work next week and said to go to the ER if any symptoms worsened over the weekend.

On Saturday October 13, Brittany's birthday, the cough (with blood) came back. We went to the St. Lukes ER. After 3 hours she was finally seen by the ER doctor and he recommended discharge. When I asked about prednisone, he said he didn't feel comfortable prescribing it. When I asked if he could page the rheumatologist (we had no ability to contact her over the weekend) he declined to do so, suggesting we follow-up on Monday with our rheumatologist. I asked about the attending rheumatologist for St. Lukes, and he said there wasn't one since it was after hours. We made a huge mistake and accepted his judgement and didn't push back harder.

On Monday, October 15, Brittany went for her lab work at BCM. Her lab work came back later to show PR3 of 13 (negative), MPO of 30 (moderate positive), normal result for Lupus anticoagulent test, negative smith antibody, negative DNA (DS) antibody, negative cardiolipin antibodiesand positive ANCA (1:40 with P-ANCA titer). The rheumatologist saw her and sent her to the St. Lukes ER. After four hours of waiting there it finally clicked with me that I needed to be aggressive to get her adequate care. I got very assertive and angry with the ER doctor and she was given methylprednisone and a bed in the hospital.

With IV methylprednisone and later 60mg oral prednisone things improved. Her chest CT and cough improved. She got a kidney biopsy on October 18 and was released from the hospital October 19.

On October 24, an ANA test resulted positive with a 1:320 titer and mixed pattern. She also had normal Eosinophils, normal C3/C4. Kidney biopsy results supported ANCA vasculitis. At this point Dr. Bhairavarasu diagnosed her with ANCA-vasculitis which she believes is GPA.

Brittany started Rituximab infusions November 5, 2017 and finished her last one on November 26. These followed the RAVE protocol. Since then the lab work has shown a lot of improvement. As of early December her ANCA, MPO, and PR3 levels are normal. Her lung CT shows significant improvement, and protein and blood cell count in urine is decreased (close to 0).

Currently she's tapering off prednisone (currently at 30 mg) and taking Imuran (50 mg).