My Journey with Polyarteritis Nodosa (PAN)

The report on my CT scan was rather strange. It said that I had spotty ground glass in my lungs caused by a virus. I was surprised as I don’t go around breathing in ground glass! I “googled” it and found out ground glass is just a description of the spots that they saw. I took a COVID Test at home which was negative.

My cousin is an oncologist. He has done some research today for me. He thinks that my pulmonary system is being affected by methotrexate. Seems that there is a toxic situation that causes methotrexate to attack the pulmonary system.
The information I have read today about this situation sounds like a good fit for me. I sent my rheumatologist a message on her portal about the toxic effects on the lungs from methotrexate. Now hopefully we can reverse the situation and my breathing can return to normal.
I’m really surprised that neither my rheumatologist nor my pulmonologist thought this through. Both should be aware of the toxic effects of methotrexate.

Following up on CT scan results. My pulmonologist saw fluid in my lungs. My oxygen levels are going lower at night. The other night it was 81. Yikes! I’m going to be getting oxygen hopefully tomorrow. My cardiologist just prescribed a water pill.
There has been mention that I have heart failure. Could be because I do have a-fib. The PAN could also be the culprit. I’m just feeling a bit frustrated and scared right now. I live alone and am in isolation because I am extremely immune suppressed. Hopefully I am going to qualify for the new drug Evusheld. I’m waiting for the hospital to call me.

SusanEllen, ground glass is often talked about in the Lung Health group. You may be interested in the information members share in this discussion:
- What is ground glass on a lung CT scan? https://connect.mayoclinic.org/discussion/what-is-ground-glass-on-a-ct-lung-scan/

Any update from the hospital? How are you doing?

Thanks. There is a question about the cause of my lung situation. One doctor thinks it could be Methotrexate Toxicity. Another is looking into a fungal infection. More testing is being planned. Meanwhile I trying to get used to having oxygen on 24/7.

Hi Susan, how have you been?I also was diagnosed with PAN with a biopsy. My symptoms are the redness on my skin (livedo reticularis) & numbness on left pinky. The redness has spread I believe it was in 2019 that I got more redness that spread to my stomach and top of feet & top of chest. I am not on any medication I’m trying to do things naturally but unfortunately I’m having some weird symptoms since 2020 where I feel dizzy wake up from my sleep just having an ill feeling like I may pass out and also I have a constant tightness on my left chest area. I don’t know if the other symptoms are connected to PAN since it’s a rare disease and not well known about. My primary doctor thinks it’s anxiety but my specialist thinks it’s PAN and urges me to be on prescription. Does anyone else here have similar symptoms as I do?

Oh finally, a fellow PAN-ite!!
You are the first person with PAN I have ever been in contact with…
Aren’t we special! lol

PAN is serious stuff. I hope you have a rheumatologist who is familiar with this disease because it can be life threatening.
In my opinion, you are experiencing the effects of inflammation. I believe that you should consider taking prednisone. It can put the evil PAN in its place for awhile and prevent it from destroying your organs or nerves. Very important.
Most doctors know nothing about PAN. I have had to teach mine…
Please be careful with this situation. Keep me posted on your journey.
Susan

Honestly I don’t wanna be on prescription but the chills I get I think may be from Covid when I got in January. But I do agree with you that my other symptoms are most likely due to inflammation. I do have a specialist but she just wants to pressure me to be on prescription which I don’t want but I do have my blood work checked.

I understand. Just keep in mind that PAN if left untreated can be fatal, and blood work doesn’t always reflect the total situation. PAN can and will destroy every single organ with the exception of the lungs.
Please take care of yourself. I am on your side, my fellow PAN mate. 🙂

@brookraven I”m glad you found Mayo Connect and hope you’ll find some of the help, advice, and tips that you’re looking for. PAN is a serious autoimmune disease and needs prompt treatment. I included a link to The Vasculitis Foundation. My sister, who has some form of vasculitis, highly recommends this group for information. Her vasculitis mostly impacted her kidneys, leaving her in chronic renal failure. I suggest that you listen to your rheumatologist and start medication or get a 2nd opinion.
https://www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/#:~:text=or%20muscle%20tissue.-,Treatment,such%20as%20methotrexate%20or%20azathioprine.
What do you hope to learn from your bloodwork?