One Year After Diagnosis

[Ben]

Hi All,

Been lurking here for a few months, just wanted to share my story. The forum has been very helpful in understanding what everyone has been going through from diagnosis to treatment to how their lives have changed. I'm closing in on 1 year anniversary of my diagnosis and reflecting on where I was a year ago, I am so much better.

Symptoms started in June 2022 much like a lot of others on the forum: nasal and sinus congestion where I was prescribed antibiotics and short term steroids that offered little or no relief. July comes around and I start to feel fatigued and struggle to do common chores around the house and yard work. ENT and primary care continue to throw steroids at it, I get sinus scans that show nothing. August rolls around and by 6PM I need to get in bed. By September I'm in bed most of the day and then start getting awful night sweats and agonizing roaming joint pain. I was getting low level fevers every afternoon. By end of September I start getting flu like symptoms and my primary care directs me to go to the hospital. I get misdiagnosed with pneumonia but the ANA test comes back as positive so I get discharged and referred to a rheumatologist. The first rheumatologist never calls back and in retrospect that was a good thing. I get an appt for 3 weeks later second rheumatologist who turns out to be a recommended doctor on the Vasculitis Foundation.

The next 3 weeks were agonizing. The doctors from the first hospital visit told me coughing up blood was common with pneumonia, but it gets worse. Night sweats continue to be awful and the joint pain was close to unbearable. I felt off balance when walking. My left arm went numb and I couldn't move it for a few hours. My fingers start turning blue the week of the rheumatologist appointment. In retrospect I should have gone back to the hospital, but after the first visit they convinced me that the next step was rheumatology. One look from the rheumatologist and he's pretty certain it's vasculitis and tells me to go directly to the ER at a major hospital in Atlanta instead of my local one near me (I'm in the Atlanta area).

So hospital admittance #2, blood work shows greatly diminished kidney function so they call in the nephrologist. Thank god the nephrologist on call had seen a few cases of ANCA vasculitis and after speaking to the rheumatologist was pretty sure of it. At this point my creatinine was 2.93 and eGFR was 24. All of my blood work was out of whack. RBC was too low, WBC too high. I was anemic. Protein urine levels of 4000. I had no idea what these meant but he told me is was quite serious. So he ordered a kidney biopsy and a bronchoscopy and got me on 60mg of prednisone. Kidney biopsy confirmed GPA vasculitis. My nephrologist is a character and explained the history of GPA and how Wegener was a Nazi sympathizer and so nobody tries to name diseases after people for this very reason.

My head is spinning at this point as before June I'd rarely been sick, was an active runner and generally enjoyed doing chores and taking of things around the house. I had now been through tons of CT scans and being wheeled around the hospital it all felt so surreal. I then developed a massive blot clot in my right leg, which swelled up like a balloon. So even after the diagnosis things got worse before they got better.

I got my first Rituximab in the hospital, eventually got discharged (after confirming I didn't have TB) and then another Rituximab 2 weeks later. They admitted me again for the second infusion to make sure I was responding well. I had to take short term disability as I was in such bad condition.

By December I'm starting to feel better and worked myself up to activities up to 30 minutes at a time. Prior to this, I'd rarely taken time for myself so it was very strange resting all day, but I caught up on my reading and watching movies. Looking back, it was a quite nice time recuperating. The rheumatologist starts a taper of prednisone. I start work back in January: I work from home so I am extremely lucky. I was taking 1.5-2 hour naps through December, so I needed to rest a lot. I got my second infusions in May and since then have gotten much better.

My wife has convinced me to rest and not overdo anything....she tells me I did everything for so long I deserve a break. For the first time in 21 years I had to hire a guy to mow the lawn and do the yard work. I've accepted this and some part of me enjoys it in fact. Latest blood work shows stable levels of creatinine hovering around 1.27-1.3. All other blood work levels are normal or mostly normal. I now have a ton of doctors (nephrologist, pulmonologist, hematologist, ENT, rheumatologist) to monitor my various issues. The blood clot in my leg is mostly better but I'll be on Eliquis forever. I'm not running again yet, but plan to start with low impact exercise in October once the Atlanta heat tapers off.

I'm currently down to 2.5mg prednisone and will be go off in October. Eliquis for the blood clot and the nephrologist likes to keep me on 25mg Losartan for good measure. Also take Vitamin D, Iron, folic acid to keep everything else in check. Will stay on 6 month infusions of Rituximab, which I am so thankful I got diagnosed after it was approved. I am very lucky I responded well to it as it certainly saved my life.

I know this probably droned on and on, but one year later I wanted to share my story for others in the club no one wants to be in.

Ben

[CapeKay]

Ben,

Thank you so much for sharing all that. I had many of the same symptoms in the same time frame and was also misdiagnosed with pneumonia. It took longer to get diagnosed which didn't happen until April 2023. My pulmonologist had run the ANCA tests in December 2022 but I could not get an appointment with a Rheumatologist until March. I had my 2nd of the first two infusions in May and will likely get the second set next month. I am particularly interested to hear that you got much better after the second set of infusions. I am hoping that is the case for me.

I had to hire someone to mow my lawn for the first time too and it killed me. Losing my independence is my biggest fear. I generally am optimistic and handle stress very well, but I have had some down days recently. It is uplifting to read this and posts from so many who have come such a long way in achieving remission. Patience has always been a strength of mine, or so I thought. I am finding it slipping when it comes to my health. Thanks for helping me to have a better day.

Kathy

[CaraJ]

Ben,

I cannot thank you enough for sharing your story, which is similar to mine. It's encouraging to know that things will eventually improve and you are living your best life. For us newbies, all the unknowns are frightening and each new pain/ache brings worry. Your story brings hope. I'm so happy for you and hope this finds you well.

CaraJ