Medication Change mid-Induction

[Support_helps]

Hello, I have renal limited vasculitis and am wondering if anyone has experience with a switch from Rituximab to Cyclophosphamide after 3 months of initial induction therapy? My first treatment that started almost 3 months ago was Rituximab with Prednisone. At first things were going well with eGFR improving and becoming stable and creatinine falling. Now after almost 3 months it looks like there is some kind of relapse before reaching the 6 month period. Will know more tomorrow after tests but it sounds like my nephrologist will want to switch over to Cyclophosphamide to try and achieve remission. Does anyone have this experience as I'm just wondering how common it is to switch and what the experience of others has been. I am quite disappointed as I have been doing everything right with diet and lifestyle. Many thanks!

[Grizzly-bear]

I started with cyclophosphamide and rituximab and then dropped cyclo to just rituximab. I was told that cyclo is better at getting things under control quickly but then rituximab tends to work well for remission.

When I was initially treated my eGFR was 8 which was why they needed something to work super fast and I was informed rituximab was too high risk for not getting it under control.

Been on rituximab for 3 years now and it’s been slow but worked my way up to CKD2 from CKD5, but doubt I’d have managed that without cyclo initially

[Support_helps in reply to Grizzly-bear]

Thank you that helps a lot......I will mention to the doc tomorrow. Good luck with the ongoing management.

[Grizzly-bear in reply to Support_helps]

Thank you - good luck with your treatment

[2534]

I had 10 pulses of Cyclophosphamide well before RTX and it did not do anything at all to improve the vasculitis. However RTX has been brilliant. It seems that, after around 7 years of it, it may be loosing some efficacy and, although, I have the very best vasculitis consultant, the rheumatology team seem to be taking over and wanting me to go back on old Rheumatology drugs which never worked in the first place.

I do hope the Cyclophosphamide really works for you - it does for a lot of people. I think in my case if RTX ceases to work I will be hoping to find a newer drug which I haven’t tried before

[Investigator1]

Other way round for me Atimlin_1 it was the Cyclophosphomide first but it did the job after 4 blasts and put me in remission so it did work, felt a little dodgy but not too bad with it. You’d be fine. Forward.

[Main1234]

hi Cyclophosphamide for my partner first and high steroids then AZA . Unfortunately he had a flare so commenced RTX and now on MMF .

It does seem that one size does not suit everyone, the important thing is to have a good consultant who has experience in vasculitis.

Good luck

[Support_helps]

Grizzly-bear 2534 Investigator1 Main1234 thank you all this is very I helpful! Had a good chat with my neph today and defintely there is no "one size fits all". Your comments and input gives me hope. I thought I was a mentally tough person but this "good news bad news" roller coaster is taking its toll. I appreciate your taking the time to write. Best of luck in your ongoing journey.

[FryTuck]

I also was switched to cyclophosphomide after only a short period of being on a cycle of Rituximab. Unlike you, I was suffering from Granulomotosis at the time and my hearing and nasal bridge were becoming severely affected. This did the trick - and miraculously my hearing improved dramatically and I am now feeling much less fatigued with very little in the way of inflammation. I am now off steroids and on a lowish maintenance dose of Azathioprine. The cyclophosphomide can make you feel a bit nauseous and my hair thinned out quite a bit, but it appeared to make a big difference and I was grateful to my consultant for switching me over to something more effective.

[Support_helps]

thanks so much that is very encouraging and well done on your improvements!!

[Robstevens1970]

Hi,

I went through a similar story after my Gpa diagnosis. Ritux with a high dose of pred tapering down over a few months. I relapsed after 3 months and was back in hospital for another 6 weeks after which I had Ritux with cyclophosphamide infusions to clear my lung infection. Also switched from pred to Avacopan which is much less harmful and touch wood I’m feeling great, almost back to myself.

I only had 3 doses of cyclo but other than feeling tired for a bit was ok. I think it’s just getting the right mix and balance which may take a while. Many people I have spoken to have said it can take 2 years for things to settle and during that time flare ups are common.

Good that you’re looking after your diet and lifestyle, always very helpful in keeping your body healthy.

Not much help to you only my experience, I wish you well with a speedy recovery.

BW

Rob

[Support_helps]

That's brilliant thanks so much, I had no idea about that 2 year window. Unfortunately no Avacopan here where I am but hoping to get back to Canada within the next year or so and continue treatments there. All the best!

[eh66]

Initially I was given two infusions of cyclophosphamide and rituximab together about 6 weeks apart and reduced the Preds to from 90mg to 0 over 3 months (they were long days) followed 18 months of rituximab. Currently my remission is holding firm.

[Support_helps in reply to eh66]

Thank you, I started cyclo 100mg today and Preds as the initial Rituximab didn't hold after about 2.5 months. Hoping for a better outcome under the new meds! Best of luck with ongoing remission!!