These are personal accounts from people affected by PAN.
By Kathy Savickas, December 2006
"I'm sorry. Your mother has a very serious and rare disease called Polyarteritis Nodosa (PAN)." The doctor's words were still ringing in our heads as we tried to understand the diagnosis. Our family looked at one another in shock. My Mom looked very scared. The doctor appeared deeply concerned.
We peppered the doctor with questions about a disease that was a total mystery to us. What does PAN mean? What is it doing to her body? How do you treat a PAN patient? How did she get it? What's the life expectancy of a PAN patient?
A week earlier we had brought my mom, Florence Becker, into the hospital in serious condition. Nearly three months of tests and evaluations couldn't adequately explain the symptoms that continued to grow worse. Shortness of breath, terrible headaches, a persistent, low-grade fever and abdominal pains had taken their toll on her. Now she was at the point of collapse.
Her kidneys had all but ceased to function. Her blood pressure was unusually and dangerously high. Something was obviously wrong but the doctors couldn't identify the cause. She was quickly placed on dialysis three days a week.
A week later a biopsy on her kidney revealed the underlying illness--classic Polyarteritis Nodosa. She was placed on an aggressive course of Cytoxan and prednisone. Her doctor told us that in her whole career she had never treated a patient with this disease. It became clear that unlike cancer, PAN was not widely known or understood.
My mom's health quickly deteriorated throughout August. The Catch-22 of treatment was damning. Treating PAN required suppressing the body's immune system that left her open to infection. Unfortunately she contracted such an infection and her ability to fight it was gone.
On September 12, 1998 Florence passed away from complications of PAN.
Ed Becker remembered the frustration at not finding adequate information about PAN when his Mom was ill so he decided to create a website--a central source of information about the disease. "Honestly, the site was initially created to as a web design class project. I actually forgot it was out there. A couple of weeks later I checked the site only to find 60 people had visited the site and left messages in my guest book. They were thankful to find a site with this info. That was my awakening to the real need for the PAN site."
Ed learned that visitors needed more than just information. They wanted to connect with other patients. " I remember when my Mom was diagnosed one of the first questions she asked was if anyone else out there had the disease. She wanted to talk to someone who was going through the same thing. At that time there wasn't such a forum. Now, however, I realized I could fill that need. The PAN Support Mailing list became that venue to allow members to connect with each other."
Ed checks his email every evening and on Sunday evening he moderates chat sessions that give PAN patients the opportunity to ask questions of doctors and medical researchers. The PAN Research and Support Network draws more than 688 PAN patients, their families and friends, and physicians and researchers.
Ed Becker has never charged for participation nor has he ever earned a penny from the work he does. He feels this is what he has been called to do - to help others.
Ed was motivated to join the VF because he felt the VF Education Council would be the best way to not only increase awareness of PAN, but for ALL vasculitis diseases. There's a huge challenge ahead to educate the public about these diseases and he simply felt this was one of the best venues to do so.
Although Ed is working on formulating his specific goals he is willing to put his skills to work for the cause. One of his personal goals is to work with Dick Burns and Christy Abele to help increase awareness about the Vasculitis Foundation support groups throughout the world. He has already started a campaign to get the word out in his PAN Network that such groups are out there --- maybe in their own city! He feels it would be valuable for other group leaders to let their organizations know about these regional support groups and encourage them to not only attend, but start a new one.
Ed would like readers to know there is a small (but growing) group of dedicated people who are working intensely behind the scenes to make vasculitis a household word and to get the word out about these diseases.
The evolution of Ed's PAN Network is amazing to and it shows the challenge that lies ahead for the VF as well. When he first created the PAN Network website he didn't even know if there were even three others out there with this disease. Now, he gets more members every week who have just been diagnosed. A week doesn't go by that he doesn't get an email or phone call from someone who has discovered our resource and is immensely grateful. Patient's lives have been changed--maybe saved-- because we have shared invaluable information, connected someone to a doctor or clinic, or simply provided a forum where patients can connect with each other.
By Rhonda Lane, December 2006
People beat the odds all the time, so there's no reason why we can't be among them. Still, the most useful advice I received as a patient pertained to the prednisone. A friend who is a lab supervisor for a pharmaceutical company told me, "Always remember - it's not you, it's the pills." But my other friend, a science fiction/fantasy writer reminded me of a motto from the world of swords and sorcery: "Heavy magic comes at a price."
Still, I know I'm one of the lucky ones. Things started going downhill into vasculitis Land in March 2002 when I woke up one morning with a terrible pain in my neck and couldn't close my jaw. After six months of treating the pain - which would pop up elsewhere -- I ended up in a hospital at Thanksgiving 2002 with pneumonia and congestive heart failure.
A battery of blood tests revealed severe anemia, an astronomical sed rate and reduced kidney function. Because I was "an interesting case," I had visits from a cardiologist, a pulmonologist, a rheumatologist, a nephrologist and an infections diseases specialist. My kidney function improved, so the nephrologist then dismissed the idea of a kidney biopsy, posed by my PCP.
After that, I had six months of continued anemia, continued high sed rate and more blood tests. I felt better, but my PCP was adamant that I was not out of the woods yet. Finally, a summer cold slid into bronchitis which then plunged into, once again, pneumonia and congestive heart failure. CT scans showed that my kidney was mushy, but its function improved again while I was hospitalized.
A new nephroligist succumbed to my PCPs nagging for a kidney biopsy, all the while saying, "I don't see why but he wants it so we're doing it." A couple of weeks later, the nephrologist called me back, "I don't believe it. We found something in a tiny vessel deep inside your kidney."
I underwent treatment with prednisone and Cytoxan, with a battery of high blood pressure meds to counteract the side effects. I had trouble coming off prednisone because I developed pleurisy/costochondritis/whatever, depending upon who you asked, at low doses of steroids. One time, doctors mistook that for pneumonia and hospitalized me twice until a doctor with experience with lupus patients recognized what was happening.
Bottom line: diagnosis for me took about a year and a half (counting the debilitating case of TMJ that heralded the start of the downward slide). I was on Cytoxan for a year and a half, prednisone for three years, with 2-1/2 of those years. I'm still taking blood pressure meds, although my treatment for vasculitis itself is over.
By Steve Bernhardt, December 2006
My name is Steve Bernhardt 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. 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, 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. Scheduled it for December 6, 2004 and 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 asap. We did go to someone who 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) 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: 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, 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 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!