I was discussing with the Consultant about whether to have further treatments as he told me that there was evidence to show that it would have a negative impact on how effective the vaccine would be. At present my GPA is stable and I would want to keep it that way. I have had to weigh up likelihood of future relapse with the risk of getting the virus. My experience of the last relapse is such that it took a long time to recover and left me in a weakened state regarding breathing and mobility. The fear of going through that again is as great as that of getting the virus. A rock and a hard place comes to mind.
It got me thinking about evaluating Rituximab. I haven't come to any definite conclusions as i don't feel 'Well ' after having it but it does keep things stable so objectively it is working. Subjectively it is a different matter as i have many on going issues so for me it's about different degrees of 'wellness or 'unwellness'. Don't know if anyone else can relate to that.
Anyway I have decided to have more Rituximab treatment in the hope that the vaccine makers will take into account people with impaired immune systems and the treatments they have when developing them. Also in the hope that it will continue to keep things stable.
Has anyone else heard that Rituximab will make the vaccine less effective?
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egre
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I also have GPA for over 6 years with 2 relapses, I have not had Ritux for nearly 3 years now, this is used to help reduce the steroids medication......I never had any side-effects from it has they generally give you paracetamol and anti-histamine to reduce these......
All I can say is if you are stable don’t do anything until such time that the vaccine is administered and works...... I would resist changes at the moment.
Thanks for your reply. The problem is that the vaccine won’t fully work for someone like me and my guess is it will be a long wait for one to be developed that will. In the meantime risk of flare up is very real to me so trying to prevent it is a priority.
I’m not a medic but my understanding is that the flu vaccine etc is targeted at bacteria and not a virus. I am unsure how things work but co-vid is different. Rituximab is a man made antibody and works to deplete the B cells as it is these which get overactive in GPA. The immune system is highly complex and for specialists to grapple with. However I do find it very interesting and challenging! Don’t know if this helps.
I haven’t had rituximab for 3 1/2 years as it killed my immune system and lowered my immunoglobulin levels to the point I have to replace it. I asked about my chances of a vaccine working and was told that it would be my lack of immune response that would cause the problem the same as it is with the flu vaccine. I think that’s likely to be the case whatever immune suppression we take. I’m just hoping enough people have the vaccine when and if it is available that there’s immunity in the population. It’s a tough decision for you to make.
Me too, except my Antibody Deficiency Disease immunodeficiency is simultaneous & very early onset alongside my Autoimmune comorbidities...so I’m on both long term monthly IVIG (weekly SCIG during COVID to avoid hospital infusion ward) + heavy duty long term daily immunosuppression meds. The PID UK suppprt group has been giving us good solid updates on this subject...here’s the link to their latest re COVID vaccines & COVID antibody treatments:
+ 3 excerpts in case can be useful to you or others here:
Q. I have read about monoclonal antibody treatments for COVID-19. What are these?
A. Monoclonal antibodies are antibodies that have a single specificity. They recognise and bind to a specific part of a molecule. They can be genetically engineered and produced in large amounts. When they are used in medications the drug name usually ends in ‘mab’.
Researchers are looking to neutralise the COVID-19 virus by using monoclonal antibody cocktails to target specific parts of the virus. In principle, antibodies could be given to patients in the early stage of COVID-19 to reduce the level of virus and protect against severe disease. First, research has to identify which antibodies in plasma from people who have recovered from COVID have the most anti-viral potential. Then monoclonal antibodies are generated which mimic that property are developed. These are then tested in the laboratory and successful candidates tested in animal models before they enter patient clinical trials.
Q. Are companies developing an anti-COVID-19 plasma product?
A. The companies Biotest, BPL, LFB, and Octapharma have joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited to develop a potential plasma-derived therapy for treating COVID-19. The alliance will begin immediately with the investigational development of one, unbranded anti-SARS-CoV-2 polyclonal hyperimmune immunoglobulin medicine with the potential to treat individuals with serious complications from COVID-19.
Q. What is happening with the convalescent plasma trials to treat COVID-19?
A. There are two trials ongoing in the UK: As part of the REMAP-CAP trial convalescent plasma treatment will be for people who have been in intensive care for less than 48 hours and have tested positive for COVID-19. Around 1,000 people are planned to take part in the trial and will receive plasma as part of their treatment. They will have two transfusions over two days and will monitored for 21 days to see how effective this is. The trial has recently been opened for recruitment to the convalescent plasma and currently new hospitals are being set up to participate throughout the country.
In the RECOVERY trial, the effectiveness of convalescent plasma will be assessed for treating patients with COVID-19 who are in hospital, but not in intensive care. Around 2,500 people will receive plasma as part of the trial. Like the REMAP-CAP trial, they will receive two doses over two days.
We will bring more information on these trials when we have it.
Many thanks Barnclown. As ever you have been really helpful. I will trail through the PID website later as there’s a lot of interesting info on there. I hope your SCIGs are going well, you were such a help to me when I first embarked on them.
Oh Mooka: was I really?! GOSH I’m GLAD...you’ve made my day/week...am on my 18th weekly SCIG & v impressed by the protocol, but it’s just as involved as I’d imagined & I still need to devote most of a day to it, mainly due to my age/fragility. If you ever need to switch to SCIG & feel like a chat, please feel free to message me...
I’m very surprised that am coming around to preferring SCIG because it’s safer during COVID & the protocol is so impressive & our Addenbrooke’s immunology clinic team are so great about figuring out how to solve niggles (eg my manual dexterity is very limited, so they organised a specialist needle that makes drawing up the serum more easy)
Also, time-wise there are benefits to SCIG: i have to devote a whole day to IVIG because i live 1.5 hours away, and need my infusions at a slow rate... so staying home for SCIG is easier on me even though prepping all the specialist gear + giving myself the infusion takes at least as long as i spent actually on infusion ward for IVIG (5 hours or so).
And then there is the simple fact that IV infusions by their very nature are inherently more risky...plus: more frequent lower dose IgG weekly does seem to be easier on me, eg evens out the stability of my condition generally whereas higher dose IgG monthly tended to give me a lesser degree of symptom stability
On the other hand, having to DIY such a specialist procedure on my own is a bit lonely, but i have a good Addenbrookes friend who has lupus + vasculitis + antibody deficiency disease like me, and she has switched to SCIG too during the pandemic, so , when we can, we video chat while we’re infusing
I’m also under the lovely addenbrookes team and have gone over to SCIG. I have found less side effects and don’t miss the long journeys to addenbrookes. That’s great you have a friend to talk to whilst doing yours - makes up for the lack of company. I’m interested to know that they have given you a specialist needle. I have a bit of arthritis in my hands. I can manage at the moment but have wondered what would happen if the needles get too stiff for me.
👏👏👏👏🤩...GREAT to know we’re fellow clinic patients! So glad you’re doing ok on SCIG! I get the impression the NHS found I met criteria for help cause of my hands’ crazy history .(hEDS arachnodactyly + have multiple chronic issues: OA, malignancy amputation, malrotated fracture, early onset severe simultaneous raynauds & erythromelalgia etc etc)...& I made sure my clinic could witness how much my hands struggle...
@ SCIG training, when the specialist nurse had me try drawing up the serum with the big ‘lance’, she said: see how you get on, but if you need to have a ‘micro lance’ for drawing up serum, we’ll supply these instead of these standard big lances. Then she had my try the micro lance which was MUCH EASIER! So, I said: let me try the big lance for these first 3 weeks & I’ll let you know if I need the micro lances...of course I did struggle a lot...& to my delight, when my first full delivery from Lloyds arrived, there were microlances included!
So that clever lovely nurse had realised i really would need micro lances! Made me love our clinic team even more...so, maybe ask for what they call ‘micro-lances’ to help you draw up your serum 🍀❤️
I can’t begin to understand all that you have on your plate. The immunology nurses are all so patient and understanding and I’m so happy for you that they have been able to help you with the lances. I will bear them in mind if I get to the point where I’m really struggling. Perhaps we will bump into each other in clinic one day 💕
Thanks....My feeling is: we’ve all got plenty of this dreadful stuff on our plates...understanding mine & keeping it in perspective thanks to you & others here on our HU forums is one of my main ‘coping mechanisms’ 😉... Would be so glad to meet you some day❣️🤞
Oh good! You’re welcome.Of the Primary Immunodeficiency Disease support groups we have here, PID UK is my fav because they provide such comprehensive & solid info. Membership includes patients with secondary immunodeficiencies. Even severely immunosuppressed & immunosenescent patients can benefit from the info on the PID UK website.
I am ‘lucky’ because my immunoglobulins are in good shape after Rituximab treatments. Like you I am hoping enough people will have the vaccine and consider it a duty towards protecting others as well as themselves. Here’s hoping....
I have MPA, diagnosed after 9 years of intermittent illness, in 2007. I concur with almost everything you say. Basically I am fairly unwell all the time with breathing and mobility problems and incapacitating fatigue with even slight exertion. The Rituximab seems to control relapses and stabilise things rather than actually improving matters - not that I am complaining at that!
You ask an interesting question which I will pose to the consultant at my next appointment. I know that we must not use any live vaccines and I believe that most of the Covid-19 vaccines currently being trialled are live so they will probably not be suitable for us.
The long term after effects of the virus which so many Covid-19 patients are suffering seem remarkably similar to many vasculitis symptoms with fatigue, mobility problems and kidneys and lungs affected. Perhaps there is some connection. I am pretty sure that my vasculitis was triggered by a severe bout of pneumonia or the drugs used to treat that.
You are spot on when you say that Rituximab seems to control relapses and stabilise rather than improving. I do feel ungrateful when the Consultant asks me do I think Rituximab is helping and how do I feel. I can’t lie so not sure what he makes of my reply!
I too had pneumonia at the same time of diagnosis. I feel there is a link.
Thanks for your comments. I too had pneumonia but mine was at the same time as diagnosis. Spot on with your last remark although I do believe something will be developed for our situation.
HI, I fully agree with you. Rituximab seems to keep things ok, but it doesn't seem to be the magical cure for me. I still feel things rumbling along and cannot seem to get my steroids lower than 7.5mg. It is frustrating. But I agree I will continue. Good luck. Jx
I have GPA and when Cyclophosphamide failed to control it we moved to RTX. I have been on it for almost 10 years now. As far as vaccines are concerned I am advised that the flu vaccine is less effective for me than it would be in a healthy person. However I am advised to have it as every little helps! As for Covid vaccine it is probably too early to tell but I was expecting a similar response from my consultant once they get to that stage. Personally I think it is far more important to keep our vasculitis under control and take the consequences with the other vaccines etc. The better we are overall the better chance we have of fighting the other things that are thrown at us!
I've only just seen this post, thanks to everyone, really interesting reading. Like so many people I've been hoping a successful vaccine would come along and be the answer but hadn't thought along these lines, so something to discuss with my rheumatologist.
I would say in my experience rituximab has been really positive but it took its time, was so disappointed when I first had it, I was expecting far too much. My specialist said in my case it may take a year and a half to 2 years to really start making a difference and 3 years on my health is so improved. Am overdue having it now but so hard to know whats for the best at the moment.
I have been booked in for the Rtx in a couple of weeks and have been told to self isolate for 14 days. Also to have a CO-vid test beforehand. I wasn’t expecting either although I can see the reasoning it will be hard going. My understanding is that the ‘standard’ Rtx treatment is 6 monthly for 2 years. However it seems like everyone’s experience is different and there is no ‘standard’.
Thanks for your reply. I have been having my rtx 6 monthly but haven't had it since January now and so got to have it some time soon too, I don't know how I'd successfully self isolate as I live with my teenage daughter who is due back at school next week but I suppose would have to do my best to.
Difficult times for all, really hope your treatment goes well for you
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Newly diagnosed GPA without renal involvement. Sorry it’s long. 
Rituximab experience?
Hi everyone I'm new here I need your help
