Avacopan- tell me about your experiences

[Chocolate78]

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with some serious potential side effects.

I was hoping the group would share their experiences of Avacopan please?

[Dazler99]

Hi Chocolate 78,

I recently finished an 18 months course of Avacopan and experienced no side effects that I can think of. This was combined with 6 monthly infusions of Rituximab.

To be honest, if you read the side effects of paracetamol or ibuprofen you would be worried.

I hope all goes well.

Regards

Dazler

[Chocolate78 in reply to Dazler99]

Super pleased to hear you had no side effects

[PMRpro]

ALL drugs have serious potential adverse effects - even ibuprofen and paracetamol. The PIL (patient info leaflet) lists all that are mentioned during the clinical trials that could be linked to the drug. It doesn't mean they are common or by any means everyone experiences them.

[Chocolate78]

Very true. I'm having quite a lot of side effects from the steriods so I think that's making me paranoid.

[eh66 in reply to Chocolate78]

Steroids were difficult for me; enhanced appetite, mood swings, difficult sleeping. They did their job but I was really glad to be off them

[Chocolate78 in reply to eh66]

I can't wait to be off the steriods. I'm having the same side effects you had.

[Pyranha]

Hi Chocolate 78

I've been on Avacopan since April 2024 along with 6 monthly Rituximab which got me off the steroids by July 2024. About six months ago I went through a short phase of being tired with stiff joints but that's gone now and I don't know whether that was related to the Avacopan or withdrawal symptoms from the steroids or something else. I don't think you need to worry too much about taking Avacopan, especially if it gets you of the steroids.

Hope it goes well

[Chocolate78]

Good to know the steriods can be phased out. I'd love for the swelling in my face to go away. Thank you for sharing your experience.

[elphie10]

I was on Avacopan for Nov 2023 to Dec 2024. I had no side effects. I have MPA vasculities. I went into remission in Feb 2024. I have been stable since then, thanks to Avacopan