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Old 04-15-2007, 04:06 PM   #1
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jetstream HB User
Diagnosis of Vasculitis, possibly Polyarteritis Nodosa

Hello. I am new here and not quite sure that this is the correct subforum to post this message. I've been tentatively diagnosed with a form of vasculitis (inflammation of the blood vessels), possibly Polyarteritis Nodosa (PAN). This seems to be an autoimmune type disorder as the doctor says my immune system is causing the body to inflame in certain areas. My symptoms started about 5+ years ago with occasional small red welt/nodules on my legs. They would appear, not be itchy but hurt and were warm to the touch, then go away after a couple of days, only to return again a week or two later. This cycle seems to happen on and off over and over again.

In the last year or two I started to experience some strange sensations in my hands and occasional pain in the joints associated with these flare-ups. I had biopsy done on two of these red welts about a year ago and the diagnosis is "indicative of vasculitis, possibly Polyarteritis Nodosa". After reading about PAN it is very scary stuff, a lot of people diagnosed with this disease seem to have a rapid onset with a high mortality rate within 6 months. The thing that seems strange to me is that I've had this going on for years and it has slowly but surely been getting worse.

I am currently seeing a Rheumatologist who has me on 10mg Prednisone daily and 15 mg Methotrexate orally per week. Unfortunately, while this combination seemed to have calmed things down a little bit I am still getting flare-ups and have now been getting abdominal pain for a couple months. The doctors now seem to be concerned that the inflammation previously only apparent at the skin, and to some degree, the joints, is now occuring internally and could involve important organs. I'll be having more tests shortly.

Anyone else with a form of vasculitis? Or PAN?

Looking for someone in a similar situation. This seems to be a very rare disorder.

 
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Old 04-18-2007, 11:45 AM   #2
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sujkap HB User
Re: Diagnosis of Vasculitis, possibly Polyarteritis Nodosa

my husband has henoch shonlein purpura since 2 years,which involves vasculitis on arms and legs, terrible pain in the abdomen, knee joints. He is on methotrexate 12.5 orally weekly, off prednisone at the moment. all other reports, levels are clear, I hope you can deal with your problem. We are still very confused about this illness

 
Old 04-23-2007, 01:24 AM   #3
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jetstream HB User
Re: Diagnosis of Vasculitis, possibly Polyarteritis Nodosa

Quote:
Originally Posted by sujkap View Post
my husband has henoch shonlein purpura since 2 years,which involves vasculitis on arms and legs, terrible pain in the abdomen, knee joints. He is on methotrexate 12.5 orally weekly, off prednisone at the moment. all other reports, levels are clear, I hope you can deal with your problem. We are still very confused about this illness
I am sorry to hear about your husband. It sounds like we have some similar symptoms. What does the vasculitis on his arms and legs look like? Mine appears as simply small red lumps, essentially swelling just below the skin or at the skin, about the size of a coin and they last 2-3 days before going away. Do your husbands symptoms seem to come and go, for example, lasting a couple of days and then he feels good for several days before the symptoms come back? Or, is he constantly feeling symptoms?

I am on Methotrexate of 15mg per week but the doctor has just increased it to 25 mg per week. My doctor is concerned by the abdominal pain more than anything. I had an MRA (magnetic resonance angiography) that showed mostly normal except for one area of possible narrowing or stenosis of an artery.

The weird thing is that I have been getting the outbreaks of red nodules on my legs for many years, possibly as many as 8 to 10 years but it has slowly gotten worse over the last year or two and now I'm getting additional symptoms such as adominal pains which I never had before this year.

I too am very confused by this condition but I am now seeing a doctor at the Mayo Clinic which seems to be an excellent facility. He has discussed trying something other than Methotrexate should it not help calm down this process. He said there are other medications that suppress the immune system in different ways that could be tried.

Best wishes.

Last edited by jetstream; 04-23-2007 at 01:26 AM.

 
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