Good morning…it’s 5.00 and it appears to be Duracell bunny time after my second Rituximab infusion yesterday!
Please can I ask you lovely people on RTX a couple of questions. My rheumatology department is hard to get hold off at the best of times and I would rather have opinions from fellow RA ‘warriors’ anyway.
First, just how careful are you being in these COVID times?
I mask up in any indoor settings, never eat/drink indoors at cafes etc and basically am extremely careful at all times. My social life consists of outdoor walks with friends and very little else. (My saint of a husband seems quite happy to go along with this… maybe he’s just anti-social😊)
I see my grandchildren regularly and won’t stop doing that unless they are really snotty!But I do mask up in the car and I’ve avoided them after their anti-flu nasal treatments. The eight year old is given to unexpected ‘guerrilla hugs’ so I have to be a bit aware at all times and ready for ambushes.
I haven’t had COVID and managed to avoid it when my husband caught it while we were on holiday and we were isolated in the same room for a week. So maybe I am Teflon coated…at least that’s what my rheumatologist seems to think as he fast-tracked me on to Rituximab with very little preparation.
I have had my 6th jab and my flu vaccination, though I think they may have come too close to the infusions to be of much use.
Other question is… about ongoing boosters etc. advice about timing seems very conflicted. When are you scheduling your vaccinations please?
Thank you so much…sending big virtual hugs to anyone who needs them on this rather windy, wet morning!
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Nordywalker
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Wow I was just about to post here with quite similar situation (minus the grandchildren) re so Teflon - to ask questions!
So I think I’ll follow this rather than post here myself because a) I have no answers and b) I would’ve getting it for rare rheumatic autoimmune rather than for RA. I did post on my charity’s community but no answers so far as very few patients with systemic sclerosis/ scleroderma so the community is small and responses there are usually slow - if any. My rheumatologist mostly sees patients with RA and Lupus (her specialism) which I don’t have as full blown but RA used to be in my overlap.
Mostly I have Sjogrens and scleroderma and she enthusiastically said that she felt Rituximab was next and seemed delighted that I was getting my 6th Covid vaccine last weekend along with flu jab. Would have had first infusions by now if she’d had her way!
But the thing is that I’m already on maximum dose of immunesuppressant, Mycophenolate. So I’m not sure how effective the vaccines have been for me. I do plan to get myself antibody tested soon - but my main concern is the continued shielding thing.
Also my GP practice has now dispensed with mask wearing and I heard the receptionist telling a patient this and saying “that’s all over now - hopefully!” The practice nurse came for me unmasked and I had to take my FFP3 off so she could look inside my mouth to identify and confirm severe oral thrush and then examine my jaw for inflammation. So we were both at close quarters in her room unmasked😬
I know I should have asked her to wear a mask but it’s a small rural GP practice and she was being so kind and friendly that I couldn’t bring myself to. What a wimp eh?!
And as time goes on I know that this sort of thing will just happen more and more and at some point I likely will succumb to Covid because continuing to shield away socially for the rest of my days isn’t a reality I can accept. I don’t need to eat out in restaurants and cafes because I’m on a nutritional supplement liquid diet now so that’s not hard decision to make. But I would like to be able to go into museums, theatres and cinemas and enjoy social gatherings again one day in near future.
So I bought some time with my rheumatologist, since I was just recovering from a severe skin reaction to a different infusion treatment and also had scleroderma related untreated gut bacterial overgrowth. She will phone in 4 weeks for my decision after my second course of antibiotics and other infusions I get for Raynaud’s.
She’s given me the Versus flyer and it’s sitting there staring at me!
I hope you don’t mind me asking but do you have to have regular blood tests with Rituximab and how do you feel about the inaccessibility of your rheumatology team and about the NHS in general if you were to finally succumb to Covid or other? I think this is what is concerning me most rather than possible side effects.
I feel for you with the practice nurse situation….I have a lung test today, one day after my infusion, and I wonder just how safe that will be…but I hate making a fuss!
The only information about RTX I have been given by the hospital (rheumatology and infusion team) has been an A4 leaflet, not very informative!
Blood tests….I was given three bloods envelopes by the infusion team , two of which I have used. No instructions on when to use the third. I went on line at silly o’clock this morning and found that I should be having monthly tests…who knew!! So I will do that.
Confidence in being heard if one gets COVID? Pretty low really. I don’t think communication is great…even within the hospital situation. I was contacted by rheumatology yesterday while having my second infusion, to see if they needed to speed up the request for me to go on the list as they had no record of my first infusion…
I think I will write to my gp and to rheumatology to make sure that everyone knows I need antivirals if I catch Covid…I’m not sure what else I can do.
Thanks so much for both replies. Sorry you posted looking for answers but instead got me asking questions! We do sound quite similar in our not wanting to upset HCPs though.
I was so upset at receptionist telling a father and son that they didn’t need masks as “that’s all over now” - followed by practice nurse (and GPs my husband says!) unmasked that I wrote a rather plaintive concern about the new policy as described on their website on my practice’s online consultation service. I’m not sure if the practice manager or admin or a GP will respond to it. They could just say I’m being paranoid and suffering from anxiety after all this time shielding and try to reassure me that my own mask will be enough .
But I just feel GP practices should have CEV patients like us with purple flags/ mask logos at top of our files so they know to mask up, open windows and take more care with us. And I know I’m meant to ask them to do this myself but it’s just not me to do so! I have to get a parotid ultrasound done in hospital tomorrow so more removing of my mask but hopefully the sonographer will be masked.
Re the antibody tests - yes I’ve read the same and my rheumatologist did admit as much last week. However Mycophenolate also depletes the B cells - although not quite as completely as Rituximab - but it’s a close second I believe and I’m on maximum dose. I’ve stopped taking my daily dose for a week in the hope I can mount more of a response and thought I’d test myself in another week so I can get a better idea of whether I’ve got some immunity before deciding on Rituximab or not. I managed not to get it off my husband during the summer - similarly to you. Want to clarify how I’ll get the anti virals if I am unlucky as I live under different postcode to my hospital. Best of luck to you and I hope you aren’t too shattered today from the steroid insomnia last night.
I’m fine…had a bit of a wobble just now about this lung test…no COVID test before procedures except in the infusion suite…they had better be wearing a mask or I am out of there! I need to be more assertive…it’s hard!
My gp practice is as bad! You are right…they need to flag us up! It’s all very well being told to avoid people with infections… but you can’t hand out a questionnaire in the waiting room before you decide who to sit next to!
You sound as though you need a lot of strings to your bow as a patient in a collection of different departments…it takes up so much energy curating various illnesses doesn’t it!
Just written to my gp to check that they know that I’m on RTX…I bet they don’t!
it’s like an unpaid full time job isn’t it🙄🤦🏼♀️. It is no wonder so many of our cohort are taking early retirement from health and care work places if they are treated this way and feel unsafe. My neighbour was a hospital consultant but has taken early retirement due to burn out and long Covid. My husband has too as he felt he was endlessly putting me at risk for a low wage, poor working environment and no one understanding why he insisted on working with an FFP3 mask. We both feel like the last masked humans when out and about (mostly outside).
I understand your worries. I try to be careful as possible, i wear FFP3 masks , i do go for coffee inside now but only large cafes. I did get covid in August, i had been anywhere other than a shop masked up , i got antiviral infusion . I had a bad cough and felt flu symptoms but I thought I would have been alot worse.
I had last rituximab 3 weeks ago , it was put forward by a couple of weeks as wbc was low so i now cant have flu or covid until near Christmas which is annoying.
I hope you continue to avoid it and stay well, best wishes.
I also have the same result from the rituximab infusions however I have beeb told it is not caused by the rituimab itself but by the steroids that they infuse with it. I enjoy the extra energy boost unfortunately it doesn't last for longSusie
Yes…definitely the steroids…the RTX won’t kick in for some weeks…I’m just hoping that it does.
I’ve had two years of trying various biologics after seven years of near remission with Cimzia and my disease has progressed in that short time…I am really struggling now.
I am optimistic about the Rituximab but I do worry about the COVID situation though….
I’m not on rituxamab but on tocilizumab which whilst not as hard on the immune system as Rtx in my case does make me immunosuppressed as it sends my neutrophils level down pretty low. I have monthly blood tests to make sure it stays just the right side of 1. I shielded when told to by the government and am still pretty careful. I don’t go to many places inside but I have been back at work for the last 18 months; I’m a receptionist so can’t work from home. I’ve also had the occasional meal out and I do see my grandchildren unless they are snotty/coughing etc! Having said all this, even if I hadn’t been out of the door for 2 years I would still probably have caught covid as I caught it from my husband who caught it at a conference he had to attend for work! I did have anti virals and I had had 4 jabs and although it ended up as a chest infection I was not as ill with it as my husband who didn’t have the antivirals and had only had 3
That is really reassuring! I’ve been doing my own risk analysis for various situations and sorting out where I will feel comfortable.
I also have lung disease (either caused by MTX or RA…Catch 22!!) so I need to consider that too but I think you are right about the mental health aspect. I need to enjoy this life even if it has to be more restricted than before.
My granddaughters are now 12 and 8…so they will understand the new normal. And we can still have fun!
I’m definitely going with the monthly blood tests too. I think that I slipped through the information net at the hospital…all I have is one A4 information sheet which has no real information apart from the obvious. Nobody warned me about the increased immunosuppression etc…though my rheumatologist does call me an ‘expert patient’ and knows that I will be looking at research etc. But not everyone does that…I worry about the others.
It’s very reassuring to hear that you got the antivirals and that the infection wasn’t too bad! Stay safe!
Yes you do seem to have been allowed to slip through the information net! The biologic I'm on normally requires 3 monthly blood tests but because of my neutrophils the rheumy nurses like to do them monthly. They are good at letting me know if I need to get them repeated or have to miss an injection. I have also researched things myself; I agree that not everyone does that and it's worrying if they aren't being given sufficient information by the medical staff. I hope you get blood tests, vaccines etc sorted out and feel able to get out and do more things.
I have just booked my December blood test on line. 😊
Our social life at present involves Nordic Walking so at least I can carry on with the group…as long as I stay upwind of them! And don’t join them for coffee and cake indoors afterwards…🤣 I sit outside like Billy Nomates and watch the raindrops kill the froth on my cappuccino!
hello my husband has had 5 vaccines. He has had 2 rutuximab infusions the last one April of this year. Unfortunately he caught covid July/august this year, our DR was brilliant as was 119 also. He had an anti viral infusion and all in all did pretty well. Not sure where he caught it as he never goes into shops or indoor settings apart from childcare. I always wear a mask whether in work, shopping etc so we are at a loss to know how caught. I am aware masks are not 100% and you can only do what you can. I always say we live half a life 😊. How would we go about getting an antibody test as I have spoken with rheumatologist and been told they do not test for covid protection. He has had his immunoglobulins tested which is below normal as we were expecting. Must say though these last few months he is more active and able to do a little more since the rutuximab.
I did a test after my second vaccine. I bought it on line from Lloyd’s pharmacy. But I was on Cimzia then, not RTX…you have to fill up a small container with blood and send it off…the answer came back by e mail. Getting enough blood was fun…the kitchen looked like a murder scene but very little went into the bottle! Mine came back with a low average response to the vaccine. I have had my sixth jab just three weeks before going for my first infusion…my understanding is that these will have given some protection.
I thought that you could get an antibody test done officially if you are on RTX. So no murder scenes…just the usual procedure.
Morning…..that was lucky not catching Covid from hubby. Re Rituximab there are numerous posts on here which are worth a read. One being Rituximab negates the efficacy of Covid vax and flu 😭. I do go out and about but mask up in shops and walking into coffee shops. We even went abroad and I was masked in airport, plane etc but I know I am taking a huge risk….trying to have some sort of a life. Take care
I feel so much happier knowing that I’m not alone…you have all been so helpful!
As you say…you need some sort of life …so calculated risks are necessary!
I am off to my one to one Pilates class now…the windows will be open my teacher wears a mask and visor and I puff my way through my exercises wearing my mask…it’s not ideal but it’s a life!
I live in the states so it may be a little different here. My Rheumy gives me Evusheld (2 shots) every 6 months to help prevent COVID as well as my regular COVID booster shots. I also mask up indoors and try to avoid large groups. So far, so good.
Having read the thread above I think the best advice is to make your own calculated risk assessment . Life for us all is now a balance between locking ourselves away or taking risks we feel comfortable with. I recently caught Covid and within 6 hours of notifying I sent antivirals by courier . The system works well here in the UK. I wasn’t unwell at all just a dry cough.
Rituximab has been a life changer for me but I do feel ongoing management of this disease is mainly DIY. The NRAS have great supporters if you ever need to talk to other users of this medication. It helped me enormously.
I do agree about the risk assessment and I am becoming much more confident about making decisions. It helps a lot to know that we can access antivirals if necessary.
I am so glad that RTX works well for you and I totally agree about taking responsibility for ongoing management of RA…curating my various conditions sometimes feels like a full time job!
I do think flu outbreak is more of my concern because it's not been around for a few years and we haven't built up an immunity. More likely to overtake covid according to medics. As for more covid jabs I'd like to see it annually but as covid isn't going anywhere I'd be happy if necessary twice yearly . I no longer mask up.
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