Rituximab and covid

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Catkins1971
Catkins1971 Member Posts: 17
edited 28. Nov 2023, 14:09 in Living with arthritis

Hi

I’ve just been given my 2nd dose of rituximab infusion for RA which I’ve had for 17 years and wasn’t told beforehand that it’s a death sentence if you catch covid. How is everyone else dealing with this as both myself and my husband feel like our lives are now over as the consultant said I can’t go on holiday, can’t go to restaurants, etc? Which also means can’t see relatives other than outdoors. All they said before I had it was that immunity would be compromised (which didn’t seem any worse than when I was on methotrexate) but from what I’ve read this week, they shouldn’t even be prescribing rituximab now due to the dangers if you get covid. 

Hope someone has some answers as total depression has set in which obviously makes the RA worse too.

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  • Ellen
    Ellen Moderator Posts: 1,633
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    Hi @Catkins1971 welcome to the online community.

    I understand from your post that you have just had your 2nd dose of Rituximab for your Rheumatoid Arthritis and your consultant has told you that you can't go on holiday or into restaurants etc. Presumably you had been feeling a little safer having had your vaccinations and now feel as though you are back 'shielding'.

    We have a category where people who want to discuss COVID related issues tend to post Coronavirus (COVID-19)this thread might be of interest to you:

    https://community.versusarthritis.org/discussion/56050/relaxation-of-rules

    Have you heard of the Octave study at all? Many of our members have been actively following it:

    https://community.versusarthritis.org/discussion/54790/octave-study-results

    I am so glad you have decided to join the Community today and hope talking to others in a similar position will help you and make you feel less alone.

    Best wishes

    Ellen.

  • Catkins1971
    Catkins1971 Member Posts: 17
    edited 26. Jul 2022, 15:16
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    Thanks Ellen.

    Yes I had 15 years on Methotrexate which was brilliant for the RA but caused me to have a pancreatic pseudocyst followed by a stint in hospital due to splenic vein thrombosis and therefore gallbladder out. After that, my spleen has enlarged and platelets, lymphocytes etc all gone very low. Strangely all bloods went downhill once I’d have Astra Zenica jabs last year. Then developed splenic varices.

    Only had 3 covid jabs to date. Came off MTX in sept 21 due to above and struggled until mid April this year with extreme flare ups. Couldn’t take Leflunomide as BP increased and hydroxychloroquine gave me severe indigestion (another day in A&E due to suspected heart attack but only indigestion) so only thing working at moment is steroids which I can’t be on for long. So as last resort they put me on rituximab as other drugs not suitable but they neglected to tell me it’s a death sentence if I get covid.

    I had covid in March when I wasn’t on any drugs other than anti inflammatories and it was mild. However now I have no B-cells I assume it’ll be bad if I get covid again. Last covid jab was November 21 and can’t have another just yet as ineffective when just had infusion.

    Theres my life story and only 50 years old! Would be interesting to hear if other people had same reactions to MTX too. I feel like I should be in a medical study!!

  • Hbutterfly
    Hbutterfly Member Posts: 9
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    Hi @Catkins1971

    There is some information on the VA website on the risks of taking different arthritis medications and catching Covid.

    Rituximab is one of the immune-suppressing treatments that can increase your risk from COVID-19. So taking this treatment means that you should take extra care and practice social distancing to protect yourself. The guidance also states that people shouldn't stop taking their treatments for arthritis. Although it may raise your risk slightly of developing complications, not taking your medication would mean you are at risk of having a flare-up. This would put you into a higher risk group than those on treatments. 

    You can read more here Arthritis and COVID-19 - what are the risks? (versusarthritis.org)

    Hope this helps somewhat

  • Bettyboo22
    Bettyboo22 Member Posts: 23
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    Hi @Catkins1971

    Crikey it sounds like you've been through it, I have heard of people having side effects from Methotrexate but nothing to level of what you've experienced ☹️

    Did they advice you to take caution or specifically say "you can't go?"

    I appreciate it's important for you to know the risks and know how to take extra precautions but this seems a little extreme and again not something I've heard anyone else be advised to do.

    Nice to have you here with the community and hope it gives you some comfort speaking to others

    Take care

    Bettyboo22

  • Catkins1971
    Catkins1971 Member Posts: 17
    edited 26. Jul 2022, 16:26
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    Thank you for the info.

    yes she said are you planning any holidays and I said yes. She said not to go in at least the next 3 months. And as for the restaurants, she said only go if it’s not busy and ask to sit near an open window. Concerts are out unless open air which is something else I’ll miss :(

    I think I’m just annoyed that they didn’t point it out enough before giving me the infusion. I’ve had to cancel a weekend away at the coast in august as it will be too busy.

  • jamieA
    jamieA Member Posts: 712
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    https://community.versusarthritis.org/discussion/58168/rituximab-and-covid

    Hi @Catkins1971

    I think if I were you I'd ask for a second opinion - maybe contact your GP but let them know in advance what you want to discuss so they can be prepared. Since I was diagnosed with psoriatic arthritis in 2020 I've done a fair bit of reading up on both the illness and the many medications that we are prescribed. I think it's fair to say there's a whole spectrum of views on the pros and cons of all the treatments we take. This article by two professors - one American and one UK based - might be helpful.

    https://www.healio.com/news/rheumatology/20211123/rituximab-increased-odds-of-covid19-hospitalization-vs-dmards-for-patients-with-ra

    Here's one quote from it.

    “Interestingly, in our study, we did not find an association between rituximab use and mortality from COVID-19,” Singh told Healio. “This is in contrast to a few other studies that did observe an association. We speculate that this could be because prior studies did not adequately adjust for COVID-19 treatments, especially those used during COVID-19 hospitalization, as we did in our analyses.”

    I hope you can get some clear, unambiguous answers to your situation.

  • Catkins1971
    Catkins1971 Member Posts: 17
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    Thank you. I’ll definitely read that now and ask for 2nd opinion then. I think it’s because nobody knows for definite and everyone’s health is slightly different so they don’t like to commit to anything.

  • Catkins1971
    Catkins1971 Member Posts: 17
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    Hi again. So I’ve spoken to the consultant again and she’s clarified a few things about the rituximab in that I only need to be extra careful for 4 weeks until I have next covid booster and then to still wear a mask but I should be ok around other people after that. It’s recommended to get a good quality ffp2 mask though rather than the standard ones. And also the things I’ve read online are exaggerated and that these articles shouldn’t be saying it’s a death sentence as the strains are weaker now and they have treatments for if you get covid now too. Phew. I really felt relief when she told me that. Still best to cancel my holiday at coast in 2 weeks but am now looking forward to a few days away late august-first holiday in 3 years.

    Thanks to everyone who commented. I’m glad I asked for her to call back as I wasn’t in a good place earlier this week.

  • frogmorton
    frogmorton Member Posts: 29,443
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    Well done @Catkins1971

    I am so pleased it's not forever! It sounded really awful and of course would have had an effect on your husband's life too😕

    I hope you decide to become a regular poster now.

    Take care

    Toni xx

  • Catkins1971
    Catkins1971 Member Posts: 17
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    Thank you. I will. Xx

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