Hi All,
Could anyone please tell me if they are suffering from any Avacopan side effects,
I’m off prednisone now and purely on Avacopan but getting lots of headaches, tiredness and my eyes are so sore. My cough also hasn’t alleviated which is annoying.
Many thanks,
Wishing you well,
Robert
Hi Rob,
I have been on Avacopan for 9 months and now down to 1mg Prednisolone per day.
I also suffer from three out of four of your ailments, excluding the headaches. I have recently become increasingly tired but assumed that was due to dropping doses of Prednisolone. I definitely have had a persistent cough since I started Avacopan last May which I mentioned to the renal consultant who looked up the side effects and confirmed it is a listed side effect.
My eyes are sore, particularly first thing in the morning and water a lot during the day. I have suffered from Blepharitis for a number of years so not sure if Avacopan is making them worse.
I will only be on Avacopan for a year so three more months to go and then hopefully these side effects will disappear.
Hi, thanks for the reply, I’ve been on Avacopan for about 5 weeks and off pred totally from last week so not sure as to if it’s pred cold Turkey or Avacopan side effects, sounds like it is.
Many thanks for your help,
Wishing you well,
Robert
Hi Robert,
Sounds like we’re on similar journeys with the disease and drugs. My gut feeling is that our tiredness is down to Prednisolone withdrawal which will hopefully improve over the coming weeks/months. I have read a lot of really useful comments on this site advising that it can take a long time for the adrenal gland to function properly again. Some days I am completely knackered and some days I have lots of energy so hoping the ratio of good days keep improving going forwards.
Presumably you’re having Rituximab infusions as well?
Wishing you well as well
Darin
How long had you been on pred and what sort of doses? I can't work it out from your profile.
When you are on pred at above about 7mg for more than a month your adrenal function is suppressed and it only starts to recover when you get to about 3 or 4mg. The longer you are on it, the longer it takes to recover. That may be the source of your headaches and fatigue. They should improve slowly but it might be a few months until they are properly up and running.
Cough is a listed Avacopan side effect.
Hi, thanks for your reply.
Been under 7mg pred for over 3 weeks now, now just on Avacopan. Tbh I don’t know if it’s just the Vascillitus or the medication that’s causing the problems. Cheers,
Robert
Does that mean you went from 7mg to zero in 3 weeks? In which case, it almost certainly is a sluggish return of adrenal function to produce natural cortisol that is causing the problems. It really is a few months not a few weeks that it takes for your body to get its act together,
I don’t think it’s adrenal related as I don’t have the symptoms for adrenal fatigue…
Headaches and fatigue - what more do you want? You are only in the very early days of being without the pred, other things might appear. But just because there is a list of a dozen potential signs of adrenal insufficiency when it isn't secondary to pred usage, doesn't mean you will get them all, or even any besides fatigue. If you don't believe me, ask others on the PMRGCAuk forums. We are ALL on tapering pred long term so all have to get through this stage and the mantra there is the lower the slower to give your adrenals a chance.
Are you being arsey with me?
No, YOu said you have no symptoms. Headaches and fatigue are symptoms. But if you don;t want help, thats fine.
I went from 40mg to 0 in 8 weeks
Not from you your attitude stinks
Avacopan - a new medication that will soon be available for severe GPA and MPA vasculitis patients. 
Mycophenolate side effects
Meds side effects 
Methotrexate & ongoing side effects
Cyclophosphamide side effects
