Relapse of Vasculitis, Polyarteritis Nodosa (PAN)

Posted by SusanEllen66 @SusanEllen66, Dec 15, 2021

Looks like a relapse has occurred with my Polyarteritis Nodosa. I’m back on 20mg of prednisone and dreading the weight gain again. This disease is rare so I have lots of trouble getting help from most doctors. Some have never seen it before. That’s very frustrating and irritating because I go to these professionals for help and I end up teaching them all about PAN. Ugh. Sorry for the rant…

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@SusanEllen66 How frustrating to have a relapse in your Polyarteritis Nodosa! You are certainly welcome to rant! That’s what I’ve been doing lately. I have read recently that so much about autoimmune diseases is unknown and patients can expect to educate the doctors. They are learning, but not fast enough.
Are you seeing the same doctors who originally treated you?

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6 years ago I was diagnosed with Cutaneous Polyarthritis Nodosa by my dermatologist. Thankfully he was experienced with CPAN and knew what it was. Conversely, my PCP sent me to a rheumatologist who had absolutely no idea what I was going through. She actually sent me to the ER for help! Crazy. Anyway, the dermatologist was the doctor I went back to for treatment. He was great.

Now, it appears that I have relapsed, but my symptoms are very different. My new rheumatologist believes one thing, and my “old” dermatologist isn’t convinced that the CPAN is back. I need a biopsy but the nodules are too deep for a punch biopsy. The nodules that are visible are on bone (joints). So I am in a watchful mode now. I’m taking 20mg of prednisone…

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@SusanEllen66 – I agree with Becky that this is a place where you can rant all you want! We are all regular people who are stuck with a frustrating and scary disease. Usually, the family doesn’t want to listen.
I have an autoimmune disease that took years to diagnose, went away for a while and came back.
Prednisone is often the first drug to control a flare up of many autoimmune illnesses- the weight gain is depressing. Have you only taken Prednisone or have you taken another drug in addition?
https://www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/
I found the above informative site. Since the illness affects the entire body it seems there should be screening for illness in kidneys, gastrointestinal tract and cardiovascular system.
Either your PCP or Rheumatologist should be aware of this.
We often ask if you are able to be seen at a major University Medical Center, including an institution such as Mayo Clinic? In my mind it seems as if someone, like your PCP, can keep track of required testing and referrals to other specialists.
The article also stresses the importance of getting necessary vaccines- flu, pneumonia and now so important against Covid. Your immune system is suppressed by the Prednisone.
Is there a plan to biopsy the deeper nodules?

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