Steve's Story

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 Urologist, Internal Specialists, Nephrologists and Heart Specialists. I even met with a Chief Vascular Surgeon at one point, but no tests were run by him. None of them came up with a diagnosis.

J just more blood and urine tests.

After another trip to ER in November 2004, I asked my Nephrologist what she would do.
She suggested a renal arteriogram. and she scheduled it 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.

Also they suggested we see a Rheumatologist ASAP We did go to someone that came highly recommended, supposedly one of the top Rheumatologist 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. 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 mb (took me off Clonidine) 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 his blood pressure and increased my Toprol XL to 75 mg per
day and started me on Calcium with Vitadmin D (500-600 mg 3 times a day).

On December 21st I finally had a consultation with the Chief of Rheumatology UCI who called the insurance company to get a PET scan done.
The 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,, you checked on my condition every day.

On December 30th they installed a Cardioverter Defibrillator Meds now at: Diavon 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 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 he 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 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 Cytoxin Allopurinal Actonel Calcium Attitude…..zest for life…..that's what keeps me going!


This story had originally been published on the Pan-Support-Website of Ed Becker. Thank you for letting me publish it here.