VF in the News

Steve’s Story

Zest For Life

My name is Steve and I was diagnosed with PAN in December 2004 by a radiologist after having a renal arteriogram. My symptoms started in August 1998, when I went to the hospital while on a business trip with what they thought were kidney stones. Over the next few years I made several trips to the ER with flank pain, groin pain and numbness in legs and arms and high blood pressure. Although small things were noticed with the various tests they ran, no diagnosis was ever made.

During this period I also made numerous visits to urologists, internal specialists, nephrologists and cardiologists. Even met with a chief vascular surgeon at one point, but he chose not to run any tests. None of them came up with a diagnosis.

After another trip to the ER in November 2004, I asked my nephrologist what she would do. She suggested a renal arteriogram. Scheduled for December 6, 2004, it was then that I was finally diagnosed by the radiologist. “Conclusion: Constellation of findings (concentric narrowing of proximal celiac artery with surrounding soft tissue swelling, left renal micro aneurysms, and left common iliac arterial eccentric aneurysm are most likely related to endarteritis. Polyarteritis Nodosa typically presents with the micro aneurysms seen in the left kidney. Although considered less likely, mycotic aneurysms could have this appearance.”

The radiologist recommended that I see a rheumatologist ASAP. We then received a call from my nephrologist who requested to see me ASAP. They had heard of the diagnosis from the hospital and immediately prescribed clonidine and diastolic to control my high blood pressure. They seconded the suggestion to see a rheumatologist. We did go to someone who came highly recommended, supposedly one of the top rheumatologists in the area. However, he had not ever treated anyone with this disease, nor did he know anything about it. We were then referred to the Chief of Rheumatology at UCI Irvine (University of California, Irvine Medical Center).

On December 15th I called my nephrologist because my blood pressure was very low and my pulse was 114-121. I also had a bad headache and severe pressure pains behind my eyes. He saw me immediately and called UCI to explain the situation and get an earlier appointment that what we were able to get scheduled. Per the doctor at UCI, my nephrologist prescribed the following immediately:

Toprol XL-50 mg, Diovan – 80 mg twice a day, Protonix 40 mg (took me off Clonidine) and increased predisone to 60 mg per day.

On December 16th I saw a dermatologist, who diagnosed me with statsis dermatitis and provided me with medications for my legs, chest and head. On December 17th the nephrologist called to follow up on my blood pressure and increased my Toprol XL to 75 mg per day and started me on calcium with vitamin D (500-600 mg 3 times a day).

December 21st I finally had a consultation with the Chief of Rheumatology UCI who called the insurance company to get a PET scan done. Insurance company would not accept it and he scheduled a follow up for tests to be run for Jan 4th.

Over the following days I began to have intermittent heart palpitations and on December 27th was once again admitted to ER having numerous V-Tacks. Under the care of a cardio specialist numerous tests were run. They were not able to determine the cause and the only one sensitive to the PAN’s diagnosis was my nephrologist, who checked on my condition every day. On December 30th they installed a Cardioverter Defibrillator.

Meds now at: Diovan 80 mg twice a day, prednisone 60 mg once a day, Protonix 40 mg once a day, Toprol XL 100 mg once a day, calcium w/ vitamin D 500-600 mg 3 x a day, Norvasc 5 mg once a day, magnesium tabs once a day, and Keflex 500 mg every 6 hrs for 10 days.

I was released on December 31st and on Jan 4, 2006 kept my appointment with the Chief of Rheumatology at UCI and he increased the prednisone to 100 mg per day and 100 mg of Cytoxan per day.

Throughout the last year I’ve been coming down on prednisone, currently down to 5 mg. On November 7th, 2006 the doctor took me down to 50 mg of Cytoxan. Over the past several weeks I have been having much pain in my joints, my hip locks up, still have numbness in my legs and chest and a tugging feeling at my kidney. Unfortunately, our insurance will no longer cover visits to UCI so I am in search of a new doctor.

Current medication:  Diavan, Toprol, prednisone, Cytoxan, Allopurinal, Actonel, and calcium

Attitude…..zest for life…..that’s what keeps me going!

Published: December 2006

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