Life After Rituximab - Is that it?

[Investigator1]

So that time has come when I am having my last Rituximab infusion on the 22nd November, it’s been 3 years on the treatment and my Consultant has told me that’s the max. My ANCA marker is low but what happens next? I have a Consultation with my Consultant on the 20th October and of course I will ask her but prior to that I would like to pick all your brains. Is that it?, with regular blood tests, will I be given a different Oral therapy. I can’t take Azathioprine so all you thoughts please. Nick

[May7]

As I've never taken Rituximab, I can't comment on that side of things. But I was allergic to Azathioprine at the off, and therefore put onto Mycophenolate to accompany the Prednisolone. This has worked well so far, and after my inflammation was stabilised, the Mycophenolate dose was halved. Unfortunately, my body cannot cope without a 5mg dose of preds every day, so I am on this combination of meds for the foreseeable future.

[Investigator1 in reply to May7]

Thanks as usual May that’s really helpful. I am hoping I can keep away from the Steroids I have been 2 years off them now. I know that about 30-50% of people relapse. I feel a little like a lemming.

[May7 in reply to Investigator1]

If you've been off the steroids for that long, I'd imagine you'll be okay, at least I hope so. It was while I was slowly tapering off that I became very ill with my vasculitis damaged kidneys dramatically reducing their flow rate. A stay in hospital with a kidney biopsy revealed that my body wasn't making its own corticosteroids. Good luck with your next chapter!

[Investigator1 in reply to May7]

I understand May, Christmas last year was an absolute nightmare for us. We had a close relative sent a nasty text after they didn’t like their Christmas present and I started feeling really ill. I had my bloods done beginning of January, I mentioned it to my consultant and she said the results indicated I had low Cortisol and that kind of stress could have been serious. Thankfully they have recovered gradually.

[GinnyMa]

How rude! Definitely never again send this “close relative” a gift again!!

[Investigator1 in reply to GinnyMa]

Terrible person. Not on my side.Suffers from ISS (Inferior Sibling Syndrome) been like it for years. Lost cause. It’ll be the Police next time.

[GinnyMa]

I am interested in comments to your original statement because I will be getting my 7th infusion of Truxima ( a biosimilar to Rituximab) in November……will that be my last?? doc said usually 2 to 3 years. My diagnosis is MPA.

[Honeycomber]

I’m on the same timescale as you. I asked at my last appointment, my Renal consultant said I would never be discharged and they would continue to monitor me. I don’t know just what that means yet but I will ask more at my appointment in a couple of weeks.

[eh66]

I had my last Rituximab infusion in February. I am on statin and blood pressure meds for Vasculitis to aid remission. So far so good. Blood tests due in November.

[nicholson27]

I guess it depends on what condition you are having the Rituximab for. I have GPA and have been having Rituximab since 2015 at various intervals anywhere between 2 weekly when there has been a bad flare up to 2 , 4, 6, 9 and even once 12 monthly. Currently I’m managing on 9 months between infusions. If you are being told that 3 years is the maximum you can have Rituximab for and I have been on it for 7 years and still ongoing then I would question your consultant. Given the negative effects on your immune system it is not a drug that they would keep you on unless absolutely necessary so they must think that you will be ok without it. In my case it is one of the only things that keeps at bay a disease that if left to run its course will be terminal.

[Investigator1 in reply to nicholson27]

Understand nicholson27 I sat down with her and she showed me the chart for GPA and a person with my current levels so I think she must think I have a decent chance but she has said the 3 years is a recommendation and if the GPA does come back I could be on it for life so that would fit with what your telling me.

[JGK99]

I had two years on Rituximab but then caught Covid got double pneumonia and other problems - I finally after months, recovered, but since then ( over 2 years ago ) I’ve had no other treatment , my ANCA is low and I feel absolutely fine ! I have regular appointments still - I guess it depends what organs are involved for me it’s lungs and kidneys and what damage there is but speak to your consultant to confirm what their programme going forward is ..or at least your GP ..Good luck 👍

[Mooka]

I had two years of rituximab and was getting so many infections they were stopped. I went for quite a while I think it was well over a year and then I flared. I had another couple of infusions six months apart but the infections started again. I have Bronchiectasis a lung diseased caused by vasculitis and the repeated infections. Eventually they found out the bug that was causing the infections. That’s being treated but because my immunoglobulin is so low due to rituximab I now have ig replacement. My last rituximab was in February 2017. I don’t take any meds for vasculitis but ig replacement therapy is given sometimes as a medication for vasculitis. I have been monitored by the vasculitis team at least every six months during this time. Hopefully you will be off all meds and stay well.

[Investigator1 in reply to Mooka]

Thanks Mooka, I think your story is the one that’s in my head going forward, I am a glass half full person but you have to be prepared. I think my real fear is they say bog off! As long as I was monitored that would give me peace of mind knowing it wouldn’t reach the levels it was at at diagnosis. Nick.

[Mooka in reply to Investigator1]

You keep topping up that glass. I’ve met people who have got back to near normal on zero meds.

[Investigator1 in reply to Mooka]

Well done Mooka only at weekends😁. I’ll tell you something though I have having a couple of dry white wines during the Rugby and when I played for North Yorkshire I was 6 foot tall and 14 and a half stone. The size of these guys……..I thought it was the wine affecting my focus. Happy days,

[Main1234]

hi Nick, my OH was stopped his Rituximab due to Covid and started on MMF . Touch wood he has been fine and no side effects from medication it seems to suit him. He had a flare with AZA.

All his bloods have been stable and we are hoping he might get some antibodies from his recent Covid vaccine.

Know you have great faith in your consultant so let us know how you get on, it’s always a bit scary finishing treatment that has kept you well.

[Investigator1]

Hi again Main1234, hope all is well. I am kinda hoping that’s the path I take, something like Mycophenolate mofetil may be what they do and yes hopefully it will improve his depleted immune system so best of both worlds. I will let you know. I have my Covid Jab No9 tomorrow, Flu jab 26th October and Rituximab 22 November. By the way arranged all this without any input from the GP practice. Just waiting on shingles vaccine now.

[Main1234 in reply to Investigator1]

Like you we bypass the GP and sort ourselves out !

[Gurberly in reply to Investigator1]

Likewise I bypassed my GP for flu and covid vaccines. It was easier booking direct with Boots/NHS site

I am trying to get my GP to acknowledge my eligibility for a shingles vaccine (I have rituximab infusion). I don't think they are quite up to date on the latest guidelines.

[Investigator1 in reply to Gurberly]

Hi Gurberly, same issues here. I am having my Covid jab this afternoon and I am pretty sure they will ask if I want the flu, I am booked in late October with the GP for flu but if offered today by pharmacist will take it and inform GP practice I’ve had it. As far as shingles is concerned the nurse at the GP practice said it could be anytime in the next 2 years however the Pharmacist says if the GP emails them they will do it like now. I emailed the GP practice 3 weeks ago……no reply. I have my Rituximab on November the 22nd so I need to have the Shingles at least 4 weeks prior to that. Running out of time because of incompetence and lethargy. Nick.

[JackoWhite]

Hi, I was diagnosed with Wegeners in 2010 and was put on Rituximab after a flare in late 2011. I have been on Rituximab more or less since then. I was taken off it in 2017 because I developed Neutropenia but had to go back on it within 12 months because I had a flare up. My Rituximab was due earlier this month but my Consultant has put it on hold as I have had a Chronic Cough since January. Seven courses of oral antibiotics failed to clear it. I’m just out of hospital after 10 days of IV Antibiotics 4/day which seems to have the cough under control. 🤞it doesn’t come back. Sorry for the lengthy message but I have never heard of a time limit on Rituximab. As you can see from my story I have been on it more less for almost 12 years. Thankfully I don’t have kidney involvement which might be a factor that restricts the amount you can get. I’m just surmising on that. Clearly Rituximab significantly suppresses our immune system and can cause other complications. On the other hand I have found that my fatigue levels increase towards the end of a Rituximab cycle. In fact, I have been shattered for the past few days and feel it is mainly due to not getting my scheduled infusion.I had a discussion with my consultant about coming off it during Covid due to the negative impact it has on the efficacy of Covid vaccines. He delayed it for awhile but felt I could not come off it completely due to my Wegeners history. One of the things I have learned over the years is we are all unique and finding the right treatment balance for each of us is one of the the biggest challenges facing our consultant. If I were you I would certainly question your consultant on why specifically there is a time limit on Rituximab in your case and what are the best treatment options for you.

[Investigator1 in reply to JackoWhite]

Hi JackoWhite I think what she is doing (and I have full faith in her) is getting me to the end of this particular chapter to see if I can live normally without it after all about half of people don’t relapse after coming off medication. Then I am sure if I do start to relapse I am sure she will consider either putting me back on it or try an alternative medication. I am more interested in the monitoring to be honest. We are definitely all different I have had 9 Covid jabs and a recent antibody test revealed I do have antibodies and I seem able to fight of colds and infections taking a little longer to get rid. I am the opposite to you with how I feel with Rituximab, I feel a bit rough for about 4 weeks straight after and then at about 10 weeks I have a dodgy period of a few days but 3 months out I go for strength to strength. I am currently cycling 20k every weekday with weights in the afternoon and 5 mile power walks at weekends. I just won’t let it interfere with my life, for now anyway as nobody knows what the future holds. If I am put onto it again then fair enough. Thanks again. Nick.

[Hidden]

I was started on Azathioprine and Prednisone for about 8 months then had 4 infusions of Rituxan and four months later had 4 more infusions. After that, I stayed on the two oral meds for another 12 months then stopped everything completely. I have been in remission for the past 4 years with no flares. My ANCA level has been in check and all my other labs look OK except for my kidneys so my Neph said there was no need for maintenance Rituxan.

[Investigator1 in reply to Hidden]

Hi LLWegeners, I am hoping for something similar with good monitoring to detect things quickly so the treatment might not be as severe. Nick.

[Hidden in reply to Investigator1]

My Neph is who DX me, managed my treatment, and is now monitoring me. He is very knowledgeable of Wegeners GPA. I see him every 3 months and do a full set of labs each time. He adds the ANCA testing to my lab request every 6 months. I'm in the US and getting to see my doctors is not much of an issue. I've read too many times on here that people in the UK have a hard time seeing the right doctors at the right times. GPA is something that needs attention quickly or severe damage can occur.

[trijaws]

I have never heard of limitations on using Rituxan. Unless your insurance stops paying after a certain amount of time, or number of infusions. My doctor had never told me "this needs to stop after so much time". Sorry to read this is happening to you.

[Investigator1 in reply to trijaws]

Hi Trijaws as I explained earlier she has recommended it stops to see if I can be drug free, and I want to do this or I’ll never know. It is a recommendation here in the UK that after 3 years if the ANCA markers are remaining low then patients can be taken off it, however if symptoms return you can go back on to it. I don’t feel annoyed or upset about it. Worried yes! But I need to know as it’s about 50/50. Besides there are other alternative drugs that if successful can improve my immune system from its current state. Nick.

[trijaws in reply to Investigator1]

Sorry, I1, I didn't understand your initial post. Yes indeed! Get off if you can. I've been on a clinical trial and have not had an infusion in 2 yrs.The best to you.

[Investigator1 in reply to trijaws]

ThanksTriJaws