My Journey with 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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The Polyarthritis Nodosa I had in 2015 has returned. This time however it is attacking my bones, joints, and muscles. I’ve been taking prednisone, and methotrexate for about 3 months with no improvement so my Rheumatologist started Ritumax infusions last week for a total of one each week for 4 weeks. Apparently, the 4 infusions will put me into remission.

Is there anyone else here that has Polyarthritis Nodosa (PAN)?

Thanks and be well…

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@SusanEllen66

The Polyarthritis Nodosa I had in 2015 has returned. This time however it is attacking my bones, joints, and muscles. I’ve been taking prednisone, and methotrexate for about 3 months with no improvement so my Rheumatologist started Ritumax infusions last week for a total of one each week for 4 weeks. Apparently, the 4 infusions will put me into remission.

Is there anyone else here that has Polyarthritis Nodosa (PAN)?

Thanks and be well…

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@SusanEllen66 I am sorry to hear about your PAN returning. You will notice that I have moved your post into your previous discussion on this topic to keep those members who connected with you informed of your update.

While we wait for other members with PAN to join the discussion, it would be wonderful if you could share your 4-week journey here in this discussion.

How are you feeling after the first week?

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Hi Amanda, I have had minor reactions to the Rituxin like headache etc. the worst for me is the heartburn from the steroid in the IV. The PAN is still “marching on” so I see new nodules all the time. I will keep you updated. Next infusion is Wednesday.

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@SusanEllen66

Hi Amanda, I have had minor reactions to the Rituxin like headache etc. the worst for me is the heartburn from the steroid in the IV. The PAN is still “marching on” so I see new nodules all the time. I will keep you updated. Next infusion is Wednesday.

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@SusanEllen66 I, too had a bad reaction to the IV steroids when i was being given cytoxan. No one told me to avoid all citrus and tomatoes for 48 hours. I did so much better once i cut those out!

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@becsbuddy

@SusanEllen66 I, too had a bad reaction to the IV steroids when i was being given cytoxan. No one told me to avoid all citrus and tomatoes for 48 hours. I did so much better once i cut those out!

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Great information! Thanks so much

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I’ve had 2 infusions, and I am seeing some improvement! The nodules on my muscles have gotten a bit smaller, and they don’t hurt like they used to…This Wednesday I am having my 3rd. Hopefully this progress will continue. Meanwhile, I hiding out at home.

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PAN is rare (3 in 100,000)
More rare, is when it involves the pulmonary arteries.
I am having trouble with my blood oxygen levels and so I had a CT scan yesterday. PAN does not affect the lungs.
My oxygen levels are up and down from 83-94. The chest X-ray I had almost 2 weeks ago was clear, and my lungs sound good.
Polyarteritis Nodosa is an autoimmune disease that is not well understood by anyone. It’s frustrating to me when I feel bad, and can’t get an answer.
I joined the research group that is attached to the rare disease site. They didn’t even have PAN on their list for research! No wonder everyone is in the dark.
The Vasculitis Foundation is trying to raise awareness about PAN. Lots to do…

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