Life after Rituximab? What is the next chapter?

[Investigator1]

Diagnose with GPA in December 2019 and after the usual cocktail of Steroids Cyclophosphamide and an unsuccessful spell with Azathioprine I now approach my next infusion of Rituximab in a couple of weeks. My Consultant is saying because my ANCA marker is so low this should be my last one. So what happens next? Is it some form of less evasive maintenance therapy? Is it keep checking bloods and wait and see? I just can’t seem to find out so that’s why I am asking the question of you Guys. I know we are all different and know there are different strategies out there but if anyone has experienced anything. Please let me know. Nick.

[RichardGPA65yrs]

investigator1, Hi again, I also have GPA vasculitis diagnosis in Dec 2019 same as you. I had Pred for 2yrs stopped 6/12 ago. Started on Mycophenolate initially for 6/12 but relapsed - then rituximab started 2yr ago had my 18/12 dose May 22. I am due a dose about now BUT I have decided not to receive it. I am also now in remission with a ANCA now negative and CRP of 4.

My specialist is cool about my decision not to comlete the 2yr course- he says its my decision. He says that I have about a 20% chance of disease returning next year. Also, if I did receive the last 2yr dose now that my chance of relapse would be reduced to about 10%.

I made this decision as I am fed up with shielding and being at high risk of COVID. I would like my immunity back (but not my autoimmunity!!). If I was given the option of Evusheld I might be tempted to receive the last dose of Rituximab.

In answer to your question - its wait and see together with 3/12 bloods for CRP and maybe ANCA titres aswell if symptomatic. GPA relapse in the future will respond again to pred and rituximab. If we relapse at least we know what is happening now and we will get treatment quickly compared to when we first had symptoms and no one knew what we had. However, if your ANCA is low (not negative) I would go for the last 2yr dose and “complete the course”. All the best. Richard

[Investigator1 in reply to RichardGPA65yrs]

Hi mate, is CRP your ANCA marker? My ANCA marker is 3.8. But was told normal was 0-2. Sorry for being confused. Nick. PS fully understand your decision making criteria. Nick.

[RichardGPA65yrs in reply to Investigator1]

Nick, CRP is C reactive protein and is a general marker of inflammation it is normally raised in any inflammatory or infective condition. It is a good marker for active GPA vasculitis mine was 250 when I was first diagnosed. Normal is less than 10 for us.

ANCA titres are an actual measurement of the amount of nasty autoantibodies that attack a protein in our neutrophils which then burst and release nasty attack chemicals that cause the vasculitis. So yes with ANCA 3.8 it is low but as its not negative so I would go ahead with the last 2yr dose of Rituximab.

Rituximab is a monoclonal antibody that attacks a protein on your B lymphocytes and destroys them all so that you don’t make any ANCA . Its an amazing treatment for us. Unfortunately of course that also impares new antibody formation against infection.

[Investigator1 in reply to RichardGPA65yrs]

thanks Richard what is your ANCA marker?

[RichardGPA65yrs in reply to Investigator1]

Nick, my ANCA is negative at the moment so I am in remission and currently have no symptoms of vasculitis- (it was high before Rituximab). However as I previously mentioned GPA can relapse at any time in the future. I am not sure that we can ever say that we are cured.

Richard

[Mooka]

when I finished my two year course of rituximab I was supposed to go to once a year maintenance. This didn’t happen as I was getting so many sinus/chest infections. I think it was a couple of years later that I flared and had more rituximab, but the infections started again but much worse. By this time I had developed Bronchiectasis and was lurching from one chest infection to the next. My immunoglobulin levels were low because of rituximab. Eventually I started on immunoglobulin replacement therapy and nebulised antibiotics for the chest infections and don’t take any medication for the vasculitis. Although immunoglobulin in higher levels are sometimes used to treat vasculitis. This is my experience. However if I hadn’t developed such low immunity I think it would have just been a case of monitoring. We’re all different. Good luck I hope you can stay in remission.

[Investigator1]

Well Mooka we all know we can’t take anything for granted but I hope I will get into remission. After that who knows, I have had the odd cold, sore chest but nothing serious like you (touch wood) like Richard I want my immunity back when it’s deemed safe and least risk. I am fairly fit but that can be an issue I have been told because when you train or keep fit you produce a lot of white blood cells which improve your immunity but can be a factor for relapse. Day to day I think is the phrase. Nick.

[juli-pa]

Hi I was diagnosed in 2020although symptoms started 2019. I was put on 60mg pred to start & 2 rituximab infusions followed by infusions every 6 months. I was due my last one this month but contracted Covid few weeks ago. My consultant has decided to stop the rituximab now as i have been in clinical remission from the start. My anca is negative & my crp is 2. He will monitor me with bloods every 3 months & make urgent appointment if I flare. I am under renal due to kidney damage although that is also stable. I am now on 5mg pred that will also start to reduce but I will stay on cotrimoxazole as my maintenance drug.

[Investigator1 in reply to juli-pa]

Thanks juli-pa. Very useful, I think in my case because I am not quite there yet regarding ANCA Negative, my bloods in Feb/March will determine what course of action will be taken to go forward my last readings for my ANCA Marker for 2022 have been 9.6, (Jan 22), 6.1 (April 22) and 3.8 (July 22) considering I didn’t have my last Rituximab until the end of May, you would have thought I will be there or thereabouts. Let’s hope anyway. Thanks for your reply, take care and good luck. Nick.

[Mooka]

just a thought - your ANCA doesn’t have to be negative to be considered in remission. It’s an indicator not a diagnosis. I’m lucky to be treated at a specialist unit and my symptoms would be considered together with blood results.

[Investigator1 in reply to Mooka]

Thanks Mooka, a bit of a balancing act as always, remission is my target but coupled with negative ANCA would be a bonus.

[Icecrea]

Hi! I was diagnosed with vasculitis GPA in 2019. I was put on 60 mg prednisolone and given rituximab infusions every 6 months.

 I gradually reduced the prednisolone by extremely slow tapering. It was very difficult and my cortisol levels are now only just in the normal range so I wear an alert bracelet so that cortisol can be administered if I get seriously ill. 

I am now in remission and my CRP is 2. I only take Adcal3 for my bones and thyroxine for Hashimitos. I take nothing for vasculitis. 

My nephrology consultant sees me every three months and I get blood taken at each visit.

 I have stopped shielding and have just had Covid. It was like having flu for a few days. Vasculitis damaged my lungs and kidneys, but Covid really wasn’t too bad!

I am 72 years old. 

Good luck to you all!

[Investigator1 in reply to Icecrea]

hi Icecrea. Thanks for your response, how long have you been in remission? . That’s encouraging about Covid , I know not very nice for you. My lungs and kidneys were attacked but not damaged as was my nasal system, again not really damaged. So I am (touch wood) in half decent fettle at the moment.

[Icecrea in reply to Investigator1]

I have been in remission for a year. I did not have nasal problems, just lungs and kidneys.

[Investigator1 in reply to Icecrea]

Yes they say 9-12 months for your immune system to recover after Rituximab.

[yogarita1955]

morning I am exactly like you have GPA all the same treatments as you could not get on with any of them can't take any thing orally at all make me sick and feel horrible !!

ritixamab has been my saviour I feel normal again never thought I would ever feel normal again I have six months treatments and have both lasted me a year both times at the end of last year's and feeling OK so keeping going on to see what happens next if I get symptoms i will have another treatment so get it as soon as you can I was frightened wish I had had it sooner good luck 👍

[yogarita1955 in reply to yogarita1955]

to Richard

[Investigator1 in reply to yogarita1955]

hi yogarita1955, Rituximab scheduled for 17th November

[eh66]

I am hoping my next dose of Rituximab will be the last. I have CRP = 5 and currently classed as in remission. There are a few things I have been doing for a while, based partly on personal choice and partly on the consultants comments "the fitter you are the higher the baseline you start from if you get ill or relapse"; I watch my resting heart rate currently 58 but hit 90 when really bad, and keep an eye on my urine colour which was bright orange with Vasculitis. I exercise daily for at least an hour, I try to keep my BMI under control, and finally I eat a lot of fruit, vegetables and fibre to support my immune system.

[Investigator1 in reply to eh66]

Hi eh66, yes likewise, my resting heart rate is around 60, I have had to adjust my training as I have got older, I am an ex Rugby player so BMI is out the window a little because of my body shape. I power walk and manage to cover 5 miles a day within an hour and I have a cross trainer that I use on alternate days. Diet again is similar to you but I really keep the carbs down to under 70 a day if I can but loads of fruit and veg. I know being relatively fit can stimulate ANCA sometimes but it gives me peace of mind to help fight off infections including Covid..

[eh66 in reply to Investigator1]

My BMI is in the slightly overweight category which is mostly due to my exercise programme. I have managed to reduce my visceral fat by practicing intermittent fasting. This also helps the gut biome.

Basically I tend to eat beat 12:00 and 19:30 (pushed back to 21:30 sometimes for some beers or glasses of wine at weekends), usually 2 meals per day and may be the odd snack. I do eat a reasonable amount of carbs to replenish muscle glycogen, generally towards the end of a meal to reduce glucose spikes. Most of my exercise (expect longer rides or walks) is done fasted which a bit like a keto diet forces you to burn more fat. I drink quite lot black coffee or tea or green tea to stave of the hunger pangs .

[Investigator1 in reply to eh66]

It’s great to hear people have plans. I am not strictly Keto but in the zone that burns fat. I am 6ft but have a chest of 50 inches but a waist of 34 inches and weight about 15 stone and that’s exactly what I was when I was playing County Rugby so I don’t get stressed about things like that. My consultant is in no doubt the plan I adopt helped me through the steroid part of my journey. Nick.

[eh66]

I wish I had had a plan when I was on steroids too. I lost about 7kg through Vasculitis related muscle loss, then gained 7 kg of fat through steroid related eating. I can still get into the 32inch waist jeans that I could at 16. Likewise my consultant reckoned being fit helps you handle vasculitis and any other infections. Eric.

[Investigator1 in reply to eh66]

Bang on Eric, I get common colds from time to time but seem to be able to shake them odd quite quickly, sore throats and chesty cold take longer but I am always confident that I will be ok. I won’t risk work though, I train people but won’t take the risk of training in a classroom.

[Main1234]

hi , my OH consultant said to trace his last RTX ( he had 3 ) and monitor his bloods every 8 weeks. It’s now 1 year since he had his last and is well and classed as drug induced remission . He also takes Mycophenolate. He has stopped all other medication and had no problems reducing his steroids.

It’s been interesting reading these replies, we all know that every case is different and different consultants seem to have different ideas. He was told that he would be “ fast tracked” if he needed more RTX.

[Investigator1 in reply to Main1234]

Hi Main1234 (or OH of) I am on nothing but RTX. I have almost forgotten what it’s like to be drug free. I was told if I relapsed I would be on RTX for the rest of my life, to which I flippantly replied “no pressure then?” We will wait and see. Nick.

[Main1234 in reply to Investigator1]

it’s strange the difference treatments and protocols that are used .

Keep well and safe

[foweraker]

After being given a course of Ritixumab I was in remission for seven years and drug free. Had maintance apppintments at first every 3 months , then 6 months.

But left with a low IGg level of 2.5

[Puttystuff]

my husband has GPA but ANCA has always been negative. Diagnosed in 2017 at 37, and has been receiving Ritx ever since with anywhere between 6 and 10 months between doses depending on how long he can eek out just taking steroids.

Good luck on your journey x