Hi,
I had my first rituximab infusion last Tuesday. I have been supplied Avacopan, but still have Pred 40mg a day. No one has told me to stop Pred before starting Avacopan. Unsure if I should be stopping dead or finishing up existing tablets/tapering?
I will try and get hold of someone tomorrow to advise, but wondered if anyone else has experience of this situation?
Lollypocket 😀
How long have you been on pred? 40mg is a high dose and adrenal function will have been affected at that that level but I can't work out from your profile when you started. I also don't know how quickly Avacopan takes to start working: it does work quickly but can't find a statement as to whether that is days, weeks or what!
Any dose of pred above 5mg for more than 4 weeks results in adrenal suppression so the patient must taper off. You can usually taper to about 10mg quickly but the last bit should be a bit slower to avoid adrenal insufficiency problems. You must not just stop the pred cold turkey if you have been on that long.
This
ancavasculitisnews.com/tavn...
suggests they use them together and taper the pred but it doesn't say explicitly.
Bit naughty not have told you what to do! But the literature sounds pretty positive about Avacopan - a replacement for pred for any vasculitis is great news!
Good luck and hope you find someone who knows on Monday.
Hi,
It's all been a bit crazy. I saw rheumy on 4th Jan and was put on 15mg Pred. Then saw him 18th and moved up to 40mg. Renal got involved due to results of kidney biopsy, and arranged rituximab last week, as rheumy's access was less. I have not had Pred for around 6-8 years prior to this. Has been quite complicated as have been dealing with two depts, two secretaries and not sure who to ask half the time 😂
Then the only question is whether they taper the pred relative to the Avacopan - do they have/like to continue the Avacopan while tapering the pred for the clinical effect. So it will be whoever decided to use the Avacopan - do you know?
Bet you feel as if your feet haven't touched the floor!
It was the Renal team who have the access to Avacopan so guess I need to call them 👍 You are right, I have not had time to stop and think about any of it 🤪
Nor them either probably! All the best.
Hi,
I am on the same, Avacopan takes the place of prednisone which is tapered down to nothing.
I’m down to 10mg now with a drop of 5mg per week, but yes I’d advise a call to your consultant for clarification.
Hope it goes well,
BW
Rob
Hi Lollypocket,
We are in a very similar situation with all these drugs and, based on my experience, you are in very good hands and receiving all the right treatments to fight this disease.
I have been on Avacopan since last May and I’m still also taking Prednisolone. I think I was on around 15mg Prednisolone per day when I started the Avacopan and have slowly tapered down to 2mg per day and planning to reduce further this week.
I also have Rituximab infusions every 6 months with my next one due at the beginning of March.
My understanding is that all three of these drugs complement each other to fight the disease and have definitely been successful in my case as I am in remission.
The plan for me going forward is that I will continue taking Avacopan for a full year, Rituximab infusions every 6 months for a total of 2 years (5 infusions in total) and get of Prednisolone completely. The Rheumatologist mentioned another drug I would need to take after the Avacopan & Prednisolone finishes but I can’t recall what that is.
I hope this helps you. Feel free to ask anything further as I’m 9 months further down the line than you and hopefully your journey will be successful as well.
Hi,
I spoke to Renal consultant and she wants me to start tapering Pred to 30mg for a week, then 20mg for a week, whilst taking Avacopan. Then stop altogether and just have the Avacopan.
Sounds like a fast taper they are suggesting for me. I know they are concerned as last time I was on Pred I developed cataracts and I have been diagnosed with fatty liver and diabetes prior to this flare.
Good to know there are other people who have experience 👍
I'd be a bit wary of going from 20 to zero in one go - not because of the medication but because of potential adrenal insufficiency. I would at least drop to 10mg for a week and 5mg for a week before stopping. And maybe speak to the GP about it although they are often as unaware as far too many other HCPs. I have heard one say it doesn't happen!
You may be absolutely fine because you haven't been on pred very long although it is long enough to affect adrenal function, but just in case, do read up on the symptoms of adrenal insufficiency/adrenal crisis and make sure whoever you live with is aware too. If you start to feel very unwell, become confused, dizzy, call 999 and tell them potential adrenal crisis. Paramedics often have to deal with it. It is more likely if you are under any stress or ill with an infection.
Good luck with the taper.
My understanding is you can taper to 15 fairly quickly and then to 10. The rest of it has to be slow. You body will have stopped producing cortisol as pred is a corticosteroid. You should naturally produce 5mg/day so the last 5 mg is the hardest with loads of crappy side effects along the way. It's has taken me almost a year to go from 5 to 2.. you need to get a Synaptic test once you get below 5 to check your body has started to produce cortisol again. You only need to do this if you have been on pred for a while..if you have only been on pred for a month say and it was used as an acute treatment you can taper quicky to zero. Ask your GP. Whilst they may not know about vasculitis they should know about tapering pred. Obviously I am not a doctor..everyone is different and this is mine and a couple of others personal experience.
I know all this thanks - one of my specialist subjects on my home forum! However - you can taper fast to 10mg which is still above the physiological requirement which is conservatively set at 7mg or so. The test is SYNACTHEN but even a basal cortisol will do to start - effectively the synacthen test without the ACTH part and it shows if cortisol is being produced - the synacthen test shows if you have any reserves which you won;t have if you aren't making cortisol.
The point I made was that lollypocket is very much on the borderline at only 4-6 weeks on pred but on a high dose - there shouldn't be a problem in that time scale but you never know,
And frankly - if you really believe a GP knows about tapering pred, you have a lot more faith than me!!!! The reason the Endocrinology Society developed the new Red steroid card was because far too many HCPs are totally unaware of the niceties of tapering and stopping pred when you have been on it a while!!!
Hello, HealthUnlocked asked me to write to you as I had infusions of Rituximab for 2 years for Microscopic Polyangitis ( lungs and kidneys were attacked )starting in 2O14. I had 60mg of Pred in association with the Rituximab for what seemed like a long time but they were gradually reduced until they were replaced by hydrocortisone as the treatment seemed to have wiped out my adrenal gland. I’m really sorry but I can’t help you with the Avacopan because I’d never heard of it before I read your message . Maybe it didn’t exist when I was diagnosed in 2014?
What I would like to say to reassure you is that originally things looked pretty depressing for me but I’ve had some wonderful doctors here in France and while ANCAs are still present , I seem to be in remission and live virtually normale », touch wood. . My adrenal gland has come back to life since last year so I don’t need any meds for that at all. I’m immunodeficient but this is not just due to the MPA treatment but also to a gene mutation apparently and the only treatment I have is an infusion of immunoglobulin once every 3 weeks and that is ALL.
So hang on in there. It does get better and my life at 64 is virtually normal.
Take care
Linda
Avacopan wasn't approved for use until the end of 2021.
Hey all. It's my understanding that Avacopan is meant to be a steroid sparing option for anca associated vasculitis only..that cohort being EGPA, GPA and MPA. Its also my understanding that the bulk of initial testing in USA was its use as an acute rather than chronic treatment. UK testing though has been for chronic rather than acute and I understand the results have been good. Drug is expensive so probably cheaper solutions have to be tried first. The kicker for me though was being told its not suitable for treating EGPA. I would definitely question pred and Avacopan together and you will almost certainly need to taper off pred slowly. Best for your journey. Lev
I saw my Neph a few months ago and he was telling me about a patient he started on Avacopan. I asked him if that was in place of Azathioprine and he said no, it's in place of Prednisone. This tells me you probably shouldn't be taking both at the same time but I would definitely try to get a ruling on this from the doctors. I would think you would need to taper off of the Prednisone first.
The usual procedure when using drugs to replace pred is to start them in parallel and taper the pred while the "steroid sparer" works to make that possible. In most cases there is no reason not to use them together.
Hi
Just seen your post re Avacopan.
I’ve been on it since about April last year. I have been told to stop it now but without tapering…. That’s scary! Are you still on it?
Has anybody on here just stopped taking Avacopan ( Tavenos) without tapering?
Strange symptoms coming off Pred
pred reduction
Withdrawal off pred 
