Rituximab and covid: I've been on Rituximab... - NRAS

NRAS

33,527 members41,529 posts

Rituximab and covid

cathie profile image

I've been on Rituximab successfully for several years now. But since learning that Rituximab reduces the impact of covid vaccinations, my rheumatologist is understandably slow to prescribe the next infusion. I think they will, but I'm interested to know whether anyone else on Rituximab has successfully tried other medications, specifically biologics. I'd just like to know what alternatives there are so that I dont stay untreated. Im not interested in dietary or other remedies, just mainstream medical interventions. Thanks for sharing any experiences.

34 Replies

cathie, I have found the JAK inhibitors to be the most beneficial. Biologics were not so good for me.I was on Baricitinib, but got repeated minor viral infections, changed to Toficinitib and have had no problems. There are newer JAKs available on the NHS too. I take a half dose leflunomide too.

cathie profile image
cathie in reply to Mmrr

Thanks it’s very useful to know about things that work for others. How do you take them?

Mmrr profile image
Mmrr in reply to cathie

The JAKs are in tablet form, one in the morning one in the evening. They are delivered to my door 3 monthly (one month first time due the costs ).

You will need bloods checked to get your prescription.

I'm on monthly bloods, nothing to do with the JAKs. I'm chronically neutropenic, have been since pre treatment of any RA type.

I've had no side effects from Toficitinib at all.

cathie profile image
cathie in reply to Mmrr

Thanks. I'm used to regular blood tests. Tablets rather than infusions would be a great relief! I hope yours works.

Hi Cathie.

My Rheumatologist asked me to try Imraldi (Adalimumab) for the same reason.

It didn’t work for me and as I was in such a bad way and back on Prednisolone to try to cope he let me have Rixathon again in May to get my RA back under control.

I saw him this week and he’s asking me to consider an alternative again when the Rixathon wears off: either Tocilizumab or Abatacept.

I know he’s concerned about my low immunoglobulins but I think our Rheumatologists may have been told to get us off Rituximab, if possible, as it puts us at high risk of not surviving Covid plus it’s expensive and ties up hospital nursing staff (whereas subcutaneous drugs delivered by Sciencus 🤦🏻‍♀️don’t).

cathie profile image
cathie in reply to Lolabridge

Yes, I'm willing to try alternatives given the relationship between Rituximab and covid, but at the same time am OK about avoiding too much social contact. My family are/have been very supportive. I'll have to check whether Tocilizumab or Abatacept are drugs I've tried and not found successful. I do wonder whether it might be better to have a treatment that doesn't involve such high stakes every 6+ months - that is a major drawback with Rituximab. I'm keeping a note of things which other people have tried so thanks. C

Lolabridge profile image
Lolabridge in reply to cathie

I was sceptical about Adalimumab as it’s an anti-TNF and so is Benepali (Etanercept), which was the first biologics I tried and that didn’t work for me. I gather that Tocilizumab and Abatacept are not so perhaps that’s why he suggested those for me. He said no to JAK inhibitors for me as I had developed PEs a while back.

There's no one size fits all is there!

Unfortunately it’s not just a case of changing to another Biologic…each one works differently but they all have the affect of reducing the efficacy of a vaccination…..although Rtx is the only drug mentioned when eligibility for certain covid treatments is mentioned.

That is why when on Rtx we usually have to wait 3 months after an infusion before we have the annual influenza vaccination.

I’m fortunate that I have never had a Rtx induced infection….so my Rheumy is happy for me to stay on it.

I've never been asked to wait 3 months before having the flu jag - more like a month. Perhaps things vary elsewhere. I hope you continue to do well on ritux. My rheumy has not said to come off it, but he has his doubts I think.

Lolabridge profile image
Lolabridge in reply to cathie

I saw my Consultant last Tuesday and he told me to get the delayed Spring Booster (my 5th) now and we know it may not work anyway!

He knows exactly when I had my RTX (5 and 19 May) and I asked about waiting a full 8 weeks and he said no just get it. So I’m booked in for 25 June at my Surgery, which I will feel safer going to than a walk-in centre.

New Covid wave thought to be on the way so really need EVUSHELD (when U.K. government get around to buying some) but meanwhile I am being extra careful again. Infection rate in my area rising quickly according to ONS and ZOE. 🤦🏻‍♀️

cathie profile image
cathie in reply to Lolabridge

Yes I’m being careful too. Any meetings on zoom. It’s just a tiny bit more difficult to keep reminding nearest and dearest to use their diminishing stocks of tests. They are good though.

AgedCrone profile image
AgedCrone in reply to cathie

You think? If he doesn’t suggest it…be very careful to suggest coming off a successful Biologic….”just in case”I am working on the fact that I have avoided covid so far…& even though the number of infections are rising quickly again ….& my last infusion had no effect….I hope by continuing to take care….I will remain Covid free.I really wouldn’t want to end up having to start over on a new drug with all that can entail.

Hi. Was on Rituximab three years ago but developed problems with bloods so was prescribed Baricitinib, a Jak inhibitor. Tablet form, 4mgs daily, short half life so leaves your system really quickly if not tolerated for any reason. I had a brilliant two and a half years on it, no side effects at all and very quick to work - within days. Again though, as they all seem to do to me, suddenly it lost its efficacy and I began flaring in December. Then I got Covid in Feb and it switched off completely and so I’m destined for Tocilizumab at the end of this month - a biologic I haven’t tried and I’ve had most.

As others have said, we’re all different and if you find one that works well, even for a short time, it’s a bonus and at least there’s loads now to choose from, unlike when 33 years ago I started it was all the old heavy duty favourites which, if they didn’t kill you , left you with some really nasty effects! Hope you find the right one for you and good luck.

Hi, I tried Rituximab, but it didn't do enough for me. I'm on Tocilizumab, which seems to be better so far 🤞

cathie profile image
cathie in reply to Moomin8

I hope it keeps you well. How do you take it? I read that it can be used to treat covid which sounds positive

Moomin8 profile image
Moomin8 in reply to cathie

Morning Cathie 🙂I have Tocilizumab by weekly injections - it's an autoinjector/ pump-style one which is really easy to administer. I really was quite unwell before starting it: my CRP was around 85 and my ESR in November 2021 was around 80 and got up to 110; I was becoming quite immobile and very swollen. Both readings read in the normal range now: CRP 0.4 and ESR 3. I started Tocilizumab late December 2021. It isn't for everyone as we are all unique. It can increase your cholesterol, your liver results and reduce your neutrophils, which I think it has for me, so it's a juggling act - as our RA always is.

I’m glad to hear it suits you. I’m keeping a list of possible options in case my rheumatologist springs a change on me.

Hi Cathie, I've been on Rituximab or biosimilar for a few years, last year I had the 1st 2 covid vaccinations then Rituximab. 3 months later covid hit and hit hard turning into covid pneumonia, they said the antibodies were wiped out by the biologic. I was treated with Sarulimab and Toczilimab, RA drugs but fight covid Anyway fast forward 9 months and I'm going to start Baricitinib after I get back from my holiday. The only problem is GP now, need a non live shingles vaccine which they don't want to give as I'm not 70 yet, 16yrs to go but they will wait for a letter off my Rheumatologist which could take a while as she's very busy, typical isn't it. Oh yes my immunoglobulins are at 3.68 at last count. Anyway hope you get. sorted soon xx

I am on Baricinitib now as there was concern. But life was a lot easier on Rituximab. But simple infection became worse for me.

Apart from a delay of 1 month at the very beginning (my Rituximab was due early April 2020 and I had to wait until May, they took over the local private hospital and kept it as a ‘clean’ hospital) all my Rituximab infusions have gone ahead as planned.I have 2 lots every six months. My rheumatologist has never asked me to switch. I am mid forties, with no comorbities, I have pretty aggressive RA and Rituximab is the only thing that has worked for me. She says the greatest Covid risk factor is uncontrolled disease and therefore I think she doesn’t want to upset the apple cart.

For all vaccinations (including flu and Covid) I’ve been told to wait 4 weeks. I know others have been told to wait longer but I have followed my rheumatologist’s advice. I’ve had 5 Covid vaccinations.

I caught covid in February (it was inevitable with two teenagers in the house) I felt pretty rough for a few days but the antivirals arrived very quickly.

For my own mental health I’ve decided life must go on. I’m living life more or less the same as before but being sensible. Using hand gel more frequently especially after touching supermarket trolleys etc. wearing a mask in crowded indoor spaces. When we’ve been out for a meal I sit in the corner and use my family to ‘shield’ me. Since having Covid I feel a lot less anxious than I did before.

We all have to work out how much risk we’re willing to take and try to balance, risks from medication (changing and/or staying), active disease, Covid and our mental health. There is definitely no one size fits all here. Good luck in your decision making.

I was on Rituximab after Humira was not effective anymore. Whilst on it I felt very unwell for 3 years which I could only put down to Rituximab. They then gave me half dose but then due to lung issues swapped to Abatacept which I’m still on. After starting Abatacept I was diagnosed with undiagnosed Epilepsy which had been causing all of my symptoms which I blamed on Rituximab. I won’t be able to go back on it again either. I can’t take Jak inhibitors apparently due to my lung problems. I hope it works for you x

This is an interesting one. The only thing we can do is follow our own consultants advice. Each one seems to vary.

I have been told it is better to have any Covid vaccine 2/3 weeks before the infusion as after the infusion you have to wait several (3/4?) months to have a vaccine due to the white cells being wiped out.

The timing is confusing. I am due a 5th vaccine. I will have that around end June. My last infusion was March. My last vaccine was February.

I’m due to have my daughters wedding in July and fly to France in august so my consultant is keen for me to be vaccined up as much as possible.

I am not sure what will happen in autumn but I am presuming I will get another autumn vaccine (number 6) along with flu, around sept /Oct then maybe another round of ritux in November which will be 8/9 months between infusions.

She will see how I’m doing and she will see if I can wait the full year (March 2023) for next infusion, if I’m not flaring.

Ritux has been a miracle drug for me so would be loathed to stop it. It’s a balancing act.

Confusing or what!?

We have to live our lives but be sensible and I wear ffp3 masks in crowds if I can’t avoid them. Have a good summer all x

It’s been very helpful to hear others experiences. Too often have I been surprised in medical appointments and I wanted an idea of options in case replacing rituximab was raised. I’ve no intention of suggesting I change just wanted to know more.

Hi Cathie…..I had a private app with my Rheumatologist as I was scared of catching Covid with very little protection from vaccine. He encouraged me to stay on it but if I was feeling well, the time between treatments can be extended up to a year. He also said there r lots more treatments available once Ritux isnt working as well for me….which was reassuring. I am asthmatic too, so obviously concerned but with antivirals in the wings I feel more confidant. I still wear my mask in shops tho. Take care

cathie profile image
cathie in reply to Evie3

My rheumatologist suggested something similar - to be driven by symptoms rather than blood test results or dates. I’ve just written to him suggesting my next infusion could be end July early August and listing the symptoms/ things I’m finding harder to do. I’m also still being very careful about social contacts etc you’re right there’s new treatments too c

Well how do I start 🙄. My last Rtx infusion was in 2013 and at the time the doc who was going to give it to me looked at my immunoglobulins and said they were very low and he wasn’t sure it should go ahead. I wish to god I had listened to him and had refused to let it go ahead. My immunoglobulins have never recovered. And I only had two rounds total. I know I’m unfortunate for this to happen but for me it’s caused loads of problems with other treatments. Since then I’ve had baricitanib in 2018 as according to my previous consultant they couldn’t or wouldn’t treat me. Anyway I took baricitanib at a half dose propped up by prophylactic antibiotics which don’t mix well. Baricitanib was pretty good but didn’t really make too much difference to inflammation and then I started getting infections which I got over and over and baricitanib stopped working. Since then I’ve recently tried tofacitanib another JAK and only managed a month of absolute torcher every day I took a pill (half dose) the pain and inflammation increased. Rtx didn’t work for me anyway so I’m stuck looking for alternatives. I want to be proactive with what I take and the only med that has ever worked for me is methotrexate so I’ve asked if I can try it again (liver said no last time). Slow and low will be the way to go and I will see if it’s a good choice or not. If Rtx works for you I hope you can stay with it but make sure you know what your immunoglobulins are doing and don’t leave it to the medics entirely I wasn’t monitored and here I am in pain very inflamed with RA running rife until I can get something sorted taking prophylactic antibiotics to try and stave off infection and getting immunoglobulin therapy is almost impossible due to shortage, costs and managing to somehow stay healthy. I’m sure if needs be you will have lots of other options with regards to treatment so won’t be left with the problems I’ve experienced.

Cathie I know you’ve received good responses already but here is mine 🙂 I was on Rituximab and doing well but I had four Covid vaccines with no antibodies even when timed the way they want. It was agreed that I would come off of Rituximab because of the data regarding poor outcomes with Covid. I started Orencia in March as an infusion. It’s 30 minutes and I haven’t had any reaction to it. I should know how it works in another month.

I hope you find a good alternative! In my opinion there are other good options as opposed to the serious risk of hospitalization etc. so I was happy to change. It actually relieved me quite a bit.

Cathie, ask your doctor about the Evusheld shots. It provides monoclonal antibodies. You get 2 shots or 4 shots which is the same but in smaller doses (which is suppose to hurt less). You still need to have received the vaccine and boosters. Every Rituxin patient in my doctor's practice has received it. Hope this helps.

Lolabridge profile image
Lolabridge in reply to Tiredpup

Oh Tiredpup so many of us wish we could! Evusheld is not available in the U.K. yet. Our government has not yet bought any for us. 🤬😭

cathie profile image
cathie in reply to Tiredpup

I live in Scotland. I’ve had 5 doses of vaccine and expect a 6th in autumn. If I test positive for covid I can get an antiviral.

Hi Cathie

I've been on RTX for a few years, and have it annually.

I was due an infusion before my 3rd vaccine, but postponed it (with rheumatologist's blessing) as I was concerned about the Covid risk. Time rolled on and by the time RTX was arranged it was postponed again - this time by the hospital as they said I needed a 4th jab before they'd prescribe it.

I've now had the RTX infusion and I must say I was concerned about it. I didn't have any contact at all with the consultant so was unable to voice my worry, but I was quite surprised they went ahead with it, given the poor outcomes of those on RTX who catch Covid.

(They also changed me to a bio-similar with no notification. I think this is being done nationally)

I live rurally and don't have much in-person contact so I don't think I'm at huge risk, and I try to wear a mask in social settings.

Long term RTX has been successful for me so I imagine it was a question of weighing that up against the risk of Covid and the move to a new treatment.

Hope that whatever route you go is successful X

I don’t know if it’s the same where you live but here in Scotland people on rituximab are eligible for antivirals if they get covid. That’s made me a bit more relaxed about things but I don’t socialise much!

Hi Cathie,I have only had two infusions of Rituximab and had no improvement.I have previously tried Sarilumab,Erelzi, barcitinib,tofacitinib,tocilizimab unfortunately none helped.I am seeing my consultant in a a few weeks to decide what med next.Filgotinib was suggested in my letter when she wrote with results of my mri on my shoulder.I hope next med works for both of us.I also take Metojet injections.

You may also like...