Where do you live?
Fred: I currently live in Bloomington Illinois, not far from Chicago, for the last seven months. Originally from St. Louis, MO. I still consider St. Louis home, I just work In Central Illinois.
When were you (or loved one) diagnosed with Polyarteritis Nodosa?
Fred: I turned forty in March of 2000, two weeks later I was in the hospital. They said turning forty would be rough they just didn't say how rough. But this is when I was diagnosed.
What symptoms did you (or loved one) have prior to diagnosis?
Fred: It started out as pain and swelling in my right ankle. I thought I had sprained it somehow. The pain and swelling kept getting worse and then it started affecting my left ankle. Now I knew it was not a sprain since sprains don't spread.
Next it started into my shoulders and wrist and hands. Still, being hardheaded
I simply ignored it. By this time my right leg was so swollen it was the same
from the hip all the way to the ankle and very painful. I continued to let it go, then the fevers set in, so I went to the hospital and was told I had rheumatoid arthritis
and advised to see a specialist.
I set an appointment with a specialist and the earliest I could get in was
eight weeks. A few days later the condition had worsened to the point that I
function, the pain I could deal with I have a very high threshold for dealing with pain, but the fevers had got to the point where I couldn't think or function normally.
Fevers of 103 degrees for two straight days, very lethargic and no energy. So I returned to the hospital, this time they said I had cellulitis and would need antibiotics.
They started me on the antibiotics and this only seemed to increase the symptoms.
After a couple days on the antibiotics the fevers were not letting up, no energy
no desire to do anything but sleep, and just felt miserable. I called the doctor
several times and informed him that the antibiotics seemed to be worsening the
condition and was told to give them time to work.
By this time my right foot was almost completely numb to the feel, the only
sensation was pain and a burning feeling, no feel to the touch. The burning
felt like acid running through my veins. Also now my vision in my right eye was coming and going. After a couple more days a friend suggested that I see his doctor,
and called him and told him of what was happening and he said he could see me that afternoon.
I was losing vision in both eyes and my hearing was also going. I went to see
the new doctor that afternoon and he immediately put me in the hospital. I was
pretty much out of it and don't remember much of the next three days. I couldn't
see or hear and I was unconscious most of the time. I remember waking up one
morning feeling better and I asked how long I had been there and why the turnaround?
He informed me that they thought they knew what the problem was, but would
have to run test to confirm, and that they had started me on 100 mg predisone the night before.
What a difference this made almost instantaneously, I was starting to feel alive again and my sight and hearing were returning in and out. The first thing I noticed was that I was a lot smaller than I was three days earlier so I asked to be weighed and had lost thirty-five pounds in that three day period. Now I started to ask questions and was told that they had called my family in and explained that they didn't know what was wrong and if they couldn't figure it out in a couple days I would be gone.
All my systems were shutting down at this point. So they brought in some specialist
from CDC, AID(adult infectious disease), Oncology and several other
departments. It was a rheumatoligist,who had treated PAN before that finally suspected PAN on the second day and started the predisone that night that
figured it out. So over the next several days it was round after round of test to verify the diagnosis. Alot of the test were performed just to eliminate other possibilities. They biopsied one of the purple discoloration's on my leg to confirm. This is when they came in a told me I had A disease called Polyarteritis Nodosa.
How did you cope with the news that you (or loved one) had such a disorder? What was the initial reaction from family and friends?
Fred: My initial response to the news was I have never heard of it or any one ever having it, so it really didn't mean much to me. The doctors at this point hadn't explained what is was, just gave it a name. When they started explaining it I said look you don't have to go into particulars,the predisone seems to be doing the trick, this to me would be like hiring someone to put a new roof on my house and then going up there and telling them how to put it on.
I told them you don't have to give me details, just fix it. As far a family and friends, I asked them not to tell anyone anything that I would handle this. I told everyone it was nothing serious that they were on top of it and I would be fine soon. They didn't quite believe me but they didn't push anyway
Describe how your doctor gave you the news about PAN? Was he/she familiar with the disease and what course of treatment to follow?
Fred: I told him I didn't need details when he started telling me about the disease.
The doctor that diagnosed it was familiar and had treated it before, my admitting and primary doctor was not. The doctor who diagnosed asked me if I wanted him to continue treatment and I said yes. The next morning my primary doctor came in and said he had told the other doctor that he would handle treatment and would consult with him on direction to take. I wasn't real happy with this but what can you do. My primary was also a rhuematoligist and I guess he wanted to use me to gain the experience.
Describe some of your experiences with the medical community that has dealt with such a rare illness, What are some of the challenges and obstacles in information and the right treatment for a disease like PAN?
Fred: Most of my experience has been one of lack of knowledge. It is difficult to get a straight answer, most that I have dealt with have had no experience in this area. The challenge is to find the right team that wants to put forth the effort. I think I have that team now. My doctor regularly sends me to others to double check his observations, so he is working in the right direction.
What have been good and positive experiences with the medical community?
Fred: Most of my experience has been positive, all involved with my case take interest and want to help, and learn themselves.
What are some of the medications that you have taken or currently take. Describe side effects to these drugs and how you handled it.
Fred: I originally left the hospital taking only 100 mg predisone a day. After a few weeks I went to my doctor for a follow up visit, they took a blood sample. The next morning they called me a work and told me to return to the hospital, that there was something they saw they didn't like. So I returned to the hospital for more test and left a few days later with predisone increased to 160 mg a day and 50 mg a day cytoxan.
A few weeks later I again returned to the doctor for follow-up and again the next morning was called at work and told to immediately report to the hospital. This time my blood sugar was reading 864. Normal is 70 to 95.
So after more test and a few more days in the hospital this time I left with four injections of insulin a day plus the same amounts of the predisone and cytoxan.
After a couple months on the predisone it had gotten to the point were I couldn't get up a flight of stairs. Alot of muscle pain and fatigue,and just generally feeling bad. I was told that the high doses of predisone was causing this and that the treatment might seem as bad as the disease.
I felt I couldn't function like this and that this was not living. Could no longer do my job effectively nor perform simple task around the house. Activities were out of the question. So I told the doctor I was going to start cutting the predisone and what ever happens happens. Also by this time I was taking Prinivil, for high blood pressure,also caused by the predisone, 20 mg a day.
How much has your normal life and routine been affected by PAN? What have been the positive and negative effects on your family?
Fred: Most every aspect of my life had been affected at this point. Simple daily routines had become major chores. The affect on my family was one of not understanding, because I had still not explained any of this to them. I kept telling them that all these problems were caused by the meds and that soon I would be off them.
They were mostly confused and in the dark. At the time I got sick the company I work for was getting ready to open a new branch in Centralo Illinois and I had been offered the position of running the new branch. I hadn't made a decision yet, but after about eight months passing and not seeming to be improving I told them I would take the position. I figured with moving away from everyone that now I could hide this from everyone and only let them see what is necessary.
Therefore having control over how much my family would know, and still to this
day they don't know the name of what I have. I don't recommend this course of
action for anyone, this is just what works for me. I have never been sick a day in my life, not so much as even the flu until this. So family was always used to
seeing me strong and positive, by moving away, this is still all they see.
What is the most difficult thing in dealing with a long term illness like PAN? How do you keep fighting when things get to the worst point?
Fred: The most difficult thing for me has been the way it has affected my son's life, as far as the disease itself I just push through it and try to let it effect as little of my
normal routine as possible. I have already said I have a high tolerance to pain so, I just try to ignore it. I am a single parent, I have raised my son alone since he
At the time of getting sick he was eighteen and just getting ready to start
his college career. He had a full scholarship to a college and was getting prepared
Then when this happened he didn't want to leave because he was worried. I have always been his support both physically and emotionally and he had never seem me anything other than strong. So after many talks I convinced him that all was fine and that he needed to go to college and begin his future. With the move to Illinois and him going to live on campus this all worked out fine.
Now when we see each other on the weekends and holidays, I can put on enough
of a show that he believes things are better, that things are approaching normal
again. As far as keep going, I have never known anything but fighting, so this is not a problem for me. I just go and do as much as possible.
All things will work out in the end. I try to not let it affect me negatively in any form. I have even began a workout routine again. This helps me mentally, the more it hurts the more I push it, just my way of fighting back.
How important is having a community of people like Pan support mailing list in your recovery.
Fred: Finding this web site and mailing list has been a tremendous benefit to me. Finally putting other people with the same thing and knowing I am not alone. I usually
stay in the background and just read everyone else's postings. It has helped me tremendously to understand the disease and what I might possibly expect to happen in the future.
I told the doctors to do whatever just fix it and you don't have to give me
any details. So I was not really sure up until about six months ago just exactly
had was. After fourteen months and not getting much better I decided, OK I guess this is not going away so maybe I better start doing a little investigating and
find out exactly what I am fighting.
This is when I joined this group, and it has tremendously helped me understand
what this is, and that I am not in this alone and that I should be thankful
that I am still able to do because there are others that have been affected far worse than I.
I have seen and learned great courage from others in this group.
In what ways has the Internet been part of your understanding the disease. Fred: The Internet has opened my eyes to what this is all about.
Fred: This is the first time I have used the Internet for anything other than work related. I have heard of these support groups but never had the time or desire to check one out. I am glad I chose this one group. Everyone is knowledgeable and helpful.
What are your opinions on how or why you have gotten PAN?
Fred: On one of my trips to the hospital and after one of their test, they found that I have Hepatitis C.
They think I have had it since late teens or early twenties. They feel that this is what has brought the PAN on.
Any other comments about PAN or your treatment plan.
Fred: As far a future treatments we are just taking it one step at a time. I talked to the doctor treating the Hepatitis C and asked well if you think this is what caused the Pan if we treat this maybe the Pan will go into remission. He said yes that is a possibility,but we can't treat the Hepatitis as long as you are taking the predisone. I told him that is not a problem that I had already told the other doctor that I was going to start reducing the predisone anyway,so get ready and I will be off of them soon. So I began reducing the predisone little by little, even though the doctor was not happy about this.
It took eight months to get completely off, but on June 1st 2001, I took my last dose of predisone.The cytoxan seems to be holding it in check fairly well, not to many flares. I can tell you I feel much better without the predisone,and the additional flair ups I will deal with. I had to wait six months to let the predisone completely clear out of my system before starting the Pegintron treatment for the hepatitis C. on December 7th 2001 I began the treatment.
This consists of an injection I have to give myself every Friday night and then 2000 mg Ribavarin taken orally every day for the next forty-eight weeks. The injection is interferon. The sides from this are monstrous,but there is an end in sight. Its very similar to getting the worst flu you ever had every Friday night for 48 weeks.
That's why you do it on Fridays so you have the weekend to recover. So we are going after one thing at a time, once this is done then we will get back to concentrating on the PAN. They are concerned about the effect the interferon will have on the PAN.
It has had adverse reactions to other autoimmune diseases. This is the first time they have treated someone with PAN with it in this area. The hematologist treating my Hepatitis is world renowned, they say he is the best there is, so I have complete confidence in him. I have taken the treatment for four weeks now at the time of this writing, and I can definitely see signs of the PAN accelerating already.
The purple blotches are coming back big time, the purple lacing throughout my extremities, the vibrating feeling in my body is getting worse. Joint pain is increasing, but we are going to stay the course for now. This treatment also coincided with the cold weather hitting here so it is possible that this is what is causing the flair and not the interferon. Time will tell.
The only major sides I can report since coming off the predisone is I had one bout when the fevers returned and I lost the vision in my right eye again temporarily. But this was only brief.
For me I can deal with all else but the fevers, these leave me incapacitated, I can't think clear or function. Other than that the rest I can handle, the pain and stuff I just chose to ignore.
That is all I have for now, I want to say I do not advise anyone to follow this course, it is best to follow your doctors orders, this is just what works for me. The predisone is not a viable option for me, what ever the results it will be without predisone. I believe that someday with all the new ideas they will come up with a cure.
So everyone hang in until then and keep up the faith.
This story had originally been published on the Pan-Support-Website of Ed Becker. Thank you for letting me publish it here.