ANCA Vasculitis: Side effects of 60 mg of prednisone a day?

Thank you!! Gives me hope. Hope you are better. Said because kidney numbers still weren’t looking like what he wanted them to be. Go to rheumatologist on Tuesday. Hopefully he will start tapering me off of them.

Yay! After several calls and appeals, they finally approved it this week. I am so thankful. Hope it works!

There was a drug approved last yr that is better and safer for vasculitis patients than prednisone.
I dont temember the name but i think Abbve may have bought the rights to it.
If i can find the name i will post it.
My first round of pred was k. Second time i was s mess physically and mentslly. Hope i never need it again!
Good luck

Avacopan is now available. It replaces prednisone for some ANCA Vasculitis patients
It was approved last yr by the FDA

How is Vasculitis diagnosed?

@kspowell Here is what Mayo Clinic has to say about vasculitis. There are several forms of vasculitis and the testing may be different for each.
https://www.mayoclinic.org/diseases-conditions/vasculitis/diagnosis-treatment/drc-20363485#:~:text=Blood%20tests.&text=Blood%20tests%20that%20look%20for,test%20%E2%80%94%20can%20help%20diagnose%20vasculitis.
Did someone suggest that you, or someone you know, might have vasculitis?

Thanks for your response and link. Don't understand where a doc would start...it must be driven by physical location symptoms. One can't do imaging tests for the whole body.

Have they done a kidney biopsy? I was diagnosed with IGA vasculitis and I had blood & protein in my urine. They thought the IGA had damaged my kidneys. The biopsy showed I had IGA Nephropathy, a separate issue, so the vasculitis hadn’t damaged organs yet. My Rheumatologist said he’s only seen this twice. I was put on low dose Losartin which is for high blood pressure, which I don’t have. It blocks the protein from entering and damaging the kidneys. I was first given 20mg of pred. And it didn’t keep it under control. I was upped to 60mg, when I was weaning off to 5mg, my rash came back. They upped it to 20 & I’m down to 2.5mg now. See Rhem in 2 weeks and hoping he takes me off. I’m also taking 50mg Aziothiaprine daily. Prednisone is bad but I’m doing soo much better now that I’ve tapered down. Hang it there. It will get better!

My husband is the one with the issues. They did a kidney biopsy to determine the ANCA Vasculitis. They just lowered the prednisone from 60 mg to 40 mg. He has no energy, can’t sleep and what scares me is that his thought process is not there, has a really hard time concentrating. Did you have that issue? Hope and pray it gets better as he starts tapping more off of prednisone. He also has gotten shots of rituximab and is now getting a shot every week of epoetin

There are some 20 varieties of vasculitis (https://www.vasculitisfoundation.org/) all with their own complex symptoms. This is further complicated by doctors unfamiliar with the disease because, among other things, vasculitis is one of about 7000 rare diseases (https://rarediseases.org/wp-content/uploads/2019/01/RDD-FAQ-2019.pdf). When I was trying to find a doctor, the rheumatology group I ended up with took me in bec I had a primary marker: I was ANCA positive as documented by blood tests. If you have a host of symptoms your primary care physician might order some lab work try to determine which specialists to consult. Hope you find answers and medical help.