Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time)
My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines do not work while taking rituximab and patients have died while on it.
I didn’t get the infusion and am on a new tablet alongside my steroids. I am awaiting blood results to see if I have any antibodies. So it’s back to staying indoors like the first wave🤔
Written by
Maverick77
To view profiles and participate in discussions please or .
Really? Now that is very concerning. I'm due to start taking it next month, to sort out the dates at my next appointment at the end of December. I spoke to a member on this site last week about how apprehensive I was, now after reading what you've been informed, I'm beyond apprehensive 🙄
Absolutely I won’t go outside now until I get blood results to see if I have any antibodies.I read in Lupus UK magazine in the summer edition that the vaccines weren’t effective and I sent an email to my lupus nurse to find out. He told me it hadn’t been proved. But it obviously has been proved now. I can’t believe I avoided it for 20months. I have been wearing a double mask for the last 20months🤦♀️
I'm so confused. Logically if the vaccines don't work if taking rituximab then I shouldn't take it but I've lung problems (fibrosis) from the lupus and if I don't take the meds then that has its own issues. There must be something else more suitable. I'm also taking methotrexate and as a dmard it can add to being immunosuppressed but does your consultant mean the retuximab is a lot worse?
CarolMcl yes that’s what she told me. I’m on 10mg prednisilone and 20mg leflunomide daily and both medicines are immunosuppressant. But that was my option🤷♀️
I had lupus bloods done and also one to test for antibodies so I’m keeping my fingers crossed that I might have gained some antibodies from the last Pfizer vaccine I had in October 🤔
I had rituximab in February 2021 and was advised to have the vaccine Astra Zenica which was 3 weeks later,between my rituximab infusions, not much in the way of reaction for either virus dose. I did an antibody test provided by Biobank 4 weeks later and found I had no antibodies whatsoever.However I went ahead with my 3rd vaccine,Moderna in October, slightly rubbish after that for about 5 days, have not had antibody testing since.
I’m not really a panicky person and have made a huge effort to keep safe,and when my local gym opened again I have been swimming every day since, my club has excellent COVID procedures and I have also been caring for a good friend who has terminal cancer, every chemo session consultation and any other appointments, as well as almost daily visits. We are both in good spirits and and as well as we can be given the circumstances.
I realise how bad this is for a lot of us but one still must have a life, wear a face covering, avoid crowds, wash your hands and be aware but not totally paranoid, we will get through this if we act sensibly.
My rheumatologist recommended to stop methotrexate for 2 weeks prior to getting a vaccine and then continue 2 weeks after so that immune system can develop antibodies. If you are xoncdrned you can take a test to measure you covid antibody level.
I Work in a hospital but no longer have direct patient contact. I have been working from home since March 2020 . Eager to get back to my workplace and had a consultation with Occupational Health in September who ordered Covid titres before my last Rituximab infusion and I have none.So doubly vaccinated and a booster , no antibodies and back to working from home and being very careful.
I am very well on Rituximab would be reluctant to stop. Thanks for sharing your experiences this is a messy situation. Stay safe all
I recently started on Rituximab (Nov 10th and 24th) I was told to get my 3rd primary jab and the flu jab done first.My lupus has been flaring horrifically since July/august, and I’d rather get the lupus under control than worry about Covid.
I can do my best to avoid coming in to contact with Covid, avoid people, wear a mask, wash hands, stay in, etc, I’ve been extremely careful since shielding ended, and I’m not really happy about being back at work.
There isnothing much I can do to stop lupus flaring than accept treatment. It’s not yet kicked in, and for about 10 days I’ve had dreadful serositis, hopefully when the Rituximab kicks in it’ll stop. If it were a straight choice between having the vaccine for an illness I hope I’ll never contract, or having the meds for an illness I’ve already got I’d choose the meds every time.
I'm on Rituximab and i've not heard this. I did have to delay getting one of my infusions this year as I'd had my vaccine and had to wait a certain period of time between the two . The only other info I was given was that my infusions obviously made me more vulnerable to catching covid.
This is all very concerning, I had my last infusion in March 2020 just before we went into lockdown, my next dose Sept 2020 was ‘delayed’ by my consultant so I could have my vaccine and I was ok for a while but I started suffering during the summer and then got covid a few weeks ago and still not 100%, struggled to get even a telephone appointment with rhemy but seeing them in early Jan and was planning to push to start infusions again but might need a rethink, problem is with me they tried everything else before rituximab and nothing worked!
It would be interesting to know your antibody levels after covid. I've seen no comparison of the effect of vaccination and of catching the virus in terms of antibodies made.
(May be the version of the virus you caught is also more up to date than the vaccine too).
I’m due my next rituximab at the end of January, the same time I’m due my covid booster. I’ve had three primary covid vaccine doses and didn’t have a single solitary side effect from any of them, although I felt rough after my flu jab. I seriously doubt that I have any antibodies but if anyone can point me towards a good reliable test I happily pay for it doing as I work in a high risk environment for covid and having to return to the workplace is filling me with dread. If it comes to a choice between rituximab or covid booster I’d have to take the rituximab as I can’t function without it and I’m also on methotrexate weekly injections.
Morning. Can you not work from home? Your workplace has to provide a safe working environment and it's obviously not safe for you. As I said previously, I'm due to start my infusions in January and I'm very apprehensive. Fortunately I was able to give up work (I was a nurse), after shielding as I would've been in some very high risk situations. I really hope you can get something sorted soon
Hi carol. I gave up work 10yrs ago due to my lupus. I got my life back 4yrs ago when I started rituximab. I have been on holiday again and living a more normal life. And then covid comes. It has changed every bodies lives but we are even more vulnerable now. I suppose we have survived the last 20mths without a vaccine so if we are careful we should be ok🤷♀️
The papers have shown that Rituximab does reduce our response to the vaccine but by about 60% not completely. I am behaving like I did in lockdown and my partner (who is a statistical epidemiologist so follows the science evidence) is doing the same.
Yes I had also read our response was reduced by 50% or less.
I am due my 4th Infusion next month. No other treatment helped my lupus symptoms and so far so good skin has cleared up so much.
I got my booster in Oct . ( here in Irl we get Booster on 3rd jab)
I am anxious re coverage while on Rituximab and have been very careful since March 2020.
Was with Consultant today and he suggested I go ahead with Infusion and observe recommended Covid advice.
No crowded environments, masks, hand hygiene etc.
I do not have lupus butterfly rash on my face but just before Christmas I broke out in a very bad rash on my face. Cheeks very swollen, Full of whiteheads so sore hard to put cream on it. Dermatilogist said I now seem to have Rosacea and dermatitis on hair line ????
I note my hair and eyebrows have gotten vert thin since starting Rituximab. Anyone else found this.
I was told by my Rheumatologist to have my third jab and then wait four weeks before having Rituximab.
The nurse said at the time of giving the vaccine that she only had Pfizer as it's the booster jab, however I since learnt that for immunosuppressed patients I should have had the Astra Zeneca as my third jab as the same as the first two. I am now due for a booster.
My adult son who still lives with us got Covid three weeks ago but only mild as he has had all his vaccines. He stayed in his room and my husband and son took him his meals and left them outside his room. He carried on working as he is working from home. I was not worried about getting the virus. The rest of us had the lateral flow and PCR tests which thank God was negative.
I had the the first of two dose Rituximab in November and a week later went to see a consultant for my bowels who gave me antibiotics for two weeks and now I'm waiting for another appointment to have the second dose, which was canceled because of the infection in my intestine.
Amazing timing for this. I will be letting my Rheumatologist know that I will be stopping mine for now. I had no antibodies after two vaccines and have since received a second series. Too early for antibody testing.
At this point, with Omicron here and concerns about monoclonal antibodies being ineffective with this variant, it’s just not worth it to me. I’ve been so cautious for two years but knowing how studies have named Rituximab as an issue I just can’t justify it for me. I’m on mycophenolate too so maybe I just stick with that.
I wish I would have halted it last year but I didn’t realize we’d be in this position still.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Rituximab
First rituximab infusion 
