Your help is needed - experiences of Avacopan

[John_Mills]

VasculitisUK are looking for real life patient experiences of Avacopan. If you have #Vasculitis and have been prescribed Avacopan we would like to hear about your experiences of this new drug. USA, Europe, Germany, Nederland, UK - please email [e-mail]

Thank you

[Jjoy]

Ive been tracking Avacopan, now , I believe, Tavneos, for a few years. I’ve read good things about it on US vasculitis forums. However, despite questions in Parliament I didn’t think it has been ok’d by NICE to prescribe in the U.K. I’m hoping you know that patients have been given it here. I’ve been on it for 15 years and the thought of another 15 (fingers crossed) is worrying.

[jgold in reply to Jjoy]

I just wonder if you are sure that it is Avocopan that you have been on for fifteen years, or might it have been something else? From October 2014 to March 2015 I participated in what I understood was its first patient trial. This was a double blind trial so I don't know if I actually received the trial drug. It was then called CC168 ChemoCentryx. I have followed some of the UK literature since then and have never seen it call Tavneos.

[Jjoy in reply to jgold]

I meant I’d been on prednisone, sorry! Yes in the States it’s being marketer as Tavneos.

[jgold in reply to Jjoy]

Thanks. I can quite understand that after 15 years you want to get off prednisone if you possibly can. I assume the question which John Mills is asking is to provide evidence to NICE to support approval for Avacopan use in the NHS.

[EGPAGuy]

Hi John..I asked about Avacopan when I was at Addenbrookes last and this is my summary of feedback. May be viable for GPA but current thinking is that it won't be an option for EGPA. Recent testing in US (as described in vvpn videos) was only for GPA rather than all ANCA vasculitis.

[happycooky]

Hi John. I took part in the most recent Avacipan Trial. I completed a whole year of study in the hope that it would be beneficial to people diagnosed with this horrible desease. I knew in myself that I was given the plasebo but stuck it out till the end anyway. I have awaited the results with great interest but the last time I checked they had not been published. If by any chance I was taking the Drug It didn't work. I am still taking Prednisilone to this day, without it my symptoms ultimately always flare up. I was very unwell at that particular time and would love to find out if anyone actually got off steroids as that was my ultimate hope.

[John_Mills Volunteer in reply to happycooky]

Sorry to hear this… are you taking any other medication besides prednisolone?

[happycooky]

Hi John. Prednisolone is the only medication I am on at the moment. My last Retuximab infusion was pre pandemic and I have had little input from the Hospital .... unfortunately my Consultant emigrated and I now feel slightly abandoned.My new consultant decided to try me in Azothyoprine but after only a couple of months my neutraphils plumited and I had to stop taking them . I have since then been just ticking over on varying doses of prednisolone . When I have been reletively well, I have been ok with a maintenance dose of 7.5 mg but when I have been unwell I have had to increase my dose to 30mg and it takes months to reduce again . Just taking a day to day approach to medication and avoiding catching any bugs.

My current Consultant agreed that if I suffer another flare up then he would approve the Retuximab . I would have preferred not to wait for a flare up and had another Retuximab infusion as a maintenance dose but I have kinda lost the will to fight for treatment and am just crossing my fingers and hoping by some miracle that I may not actually have GPA !!!. 😂