Hi, just wondering what the consensus is now on Omicron's effect on Immunosuppressed people, ie, is it just like a bad cold for us also?? I am still taking precautions, but starting to feel like the odd one out a lot as most people now are not worrying so much if they get Omicron because of the not so bad symptoms.
I am on Rituximab, does anyone know anyone who has had Omicron with Rituximab/ or any of the other biologicals?
Mike
I can't answer your question but I too still take precautions. I'm on Cimzia and methotrexate and also have asthma.
I'm on methotrexate and adalimumab. I had covid in the first week of January, so most likely omicron. Not even a bad cold, more a mild cold. Low fever for a day, bad back ache for a day and some minor sniffles. Didn't go to my chest at all, no cough which is what normally bothers me with a cold. Tested positive until day nine.
Many thanks for that, and so glad to hear you got so little infection, it does give me hope. I do wonder if there are any survey's out there, but as we are all on so different meds and all react so differently, there probably isn't a reliable answer either way! Gotta keep the precautions going I suppose!! Grrrr
I did an antibody test four weeks after my second vaccine and I had S antibodies at 700u/ml. Obviously that is only at a point in time but it reassured me that I had made some response to the vaccine. I caught covid three months after my third vaccine, just before my fourth was due. I an enrolled in a covid research study and a week after my infection I did another antibody test. This tested for both S and N antibodies. I has no N antibodies but did had S ones. They don't give information on levels. Interestingly my husband, who kindly gave me covid, had both S and N antibodies. I will get another test in six weeks, it will be interesting to see if I have produced any N antibodies by then. I believe research is showing people on rituximab have a very poor antibody response compared to those on TNF inhibitors and methotrexate.
Maybe check the US data on this? We in the States seem to have more hospitalizations and deaths due to Omicron than the UK. Fewer US residents are vaccinated than in the UK, and there seems to be consensus that the US has more cases because of this. Some vaccinated, immunocompromised COVID-19 patients continue to become ill enough to require hospitalization in the States, so I am not inclined to think that Omicron is benign generally. Vaccination seems to help most of us in some measure (some more than others).
Good idea, I have had a quick look and a study by (Johns Hopkins Bloomberg School of Public Health) found immunosuppressed are generally not more susceptible to a bad reaction from the virus. I must admit that sounds great but from what I've experienced over the last 10 years with RA, we are all so different and all react so differently it's not worth taking any more risks.I am glad to read the US data, but I shall still remain careful.
publichealth.jhu.edu/2021/o...
I’m not familiar with the study you mentioned. I do NOT have the sense that the immunosuppressed should not be concerned or cautious. To the immunocompromised (by whatever means—drug or otherwise) U.S. doctors say, “Get vaccinated. Act unvaccinated.” That’s the clearest advice I’ve heard. The vaccinated COVID-19 patients in U.S. hospitals have overwhelmingly been the immunocompromised, so caution seems warranted, and continues to be advised while Omicron circulates. Take care!
But Rtx has a completely different affect than Mtx & Adilimumab…that is why anyone on it is supposedly at such high risk.I will try to remember to ask my rheumy if any of his patients on Rtx have caught Covid.
That was what I indicated in my last sentence, but trenarren asked about "Rituximab/ or any of the other biologicals?"
I was just remarking that most reports you read on Biologics & Covid emphasise how not to have a vaccination too soon after a Rtx infusion..I haven’t seen warnings like that on anything else except >20mg of prednisolone. But I must admit I only read up on drugs I am taking.
That is true, I had to wait 3 weeks after my 2nd vaccination for my last Rituximab treatment. I must admit I thought that it would be like that for all our treatments. The answer is still, carry on being careful!!
Yes..we should all still take all precautions..no more nightclubs or pub crawls..but we can still chance Waitrose!
But after a Rtx infusion you have to wait at least three months before you can have a Cv vaccination…..same for the Influenza vaccine. So always make sure you check before you get any vaccinations.
It does actually depend on individual circumstances. I was told to have my booster 2 weeks after Rituximab before it fully kicks in. I'm about to do an antibody test to get an idea of what protection I do actually have but paying for it..wish it would come as standard for us all though!
I did one after 1st vaccine and showed 0.04% ☹️. Havent bothered doing anymore
Makes you wonder if you're better off not knowing! 😕
I must admit last year I visited my cuz in Cornwall ….we had been lateral flowed but we went to pub and other places….masks etc etc were still priority then. We had a really good time but now I know😱😱😉
Well I did the same..can't stay cooped up for ever...but won't get into that here. I am being extra cautious however after Rituximab in December...especially now with restrictions all off but have been pleasantly surprised by the amount of people still wearing a mask when I have gone out, especially as they don't have to now. With this Omicron variant..it seems re-infections are likely too.
Yes, I will need to stop all the night life, luckily it's in my dreams!! I hadn't heard about the 3 months after rtx, thanks for that. I do find it hard to get any info from our Rheumy department.
Me too…the last time I was in a nightclub …mini skirts & platform shoes were appearing first time round……guess that would be Bell Bottoms for the lads? Usually the lab keeps an eye on Rtx patients….if you don’t get your bloods done…..it’s naughty step time.
Ha ha, oh yea- and a flowery shirt😟😟. Can't believe I've put that down!!! Not round here, I've have to push and pull for everything, I went up to see the rheumatologists 3 months ago for my annual, saw a Junior doctor instead who was helping out. Rheumatology dept was empty outherwise.
Its weird times, and still no end in sight!!
I did find out at last week’s Ritux infusion that it is a chemo drug which is why we r so immunosuppressed ☹️
If you go on NHS online you will find that RTX is a genetically engineered chimeric mouse/human monoclonal antibody.The site explains all about it….it is very well described & explains it’s use for Rheumtoid Arthritis & Vasculitis.
There are also good explanations on - BSR Guidelines on the use of Rtx In RA
MTX is also a chemo treatment and anti TNFs (Tumour Necrosis Factor) but in smaller doses
We are all unique. Be careful is my advice. Long Covid is the thing I fear; we have no idea how it will react to everything else we have going on 🥺.
Agreed entirely!
On the NRAS zoom last week, the yearly update, they said that no-one on Retuximab had reported to the Zoe Covid Study; they weren't sure why but one assumption was that some/many people on Retuximab were extra careful as this is the drug the experts are more unsure about. I'm on it too and still being careful especially as my last infusion was 23rd December.
Do you mean nobody on Rtx was actually reporting on Zoë, or that nobody on Rtx had reported contracting Covid?
I'm on Rtx, have been reporting on the zoe app since the start, but I've never been asked to disclose any prior health issues?
Sorry I meant they said no-one had reported having contracted covid while on retuximab.
Have ever reported any side effects to Zoë?I recall back at the start of the vaccinations…if you reported side effects they asked if you had any health conditions.
I had quite a few & they went into details including any medications you were on.
No, I've had nothing all the way through except for a sore arm after vaccination! I must admit that since my last rtx treatment I've not had a bad days health. (Last February) But think I'm just starting to get some signs of flares now.
You could have been part of Zoe research study as well if you had the app. They ask you about underlying health conditions on there via email and website rather than app.
You can still join the Zoë App…they are asking for volunteers for future research.l it’s very informative.
Well I’ve been doing Zoe reporting almost since it first started and I told them I’m on Rituximab.
Sorry I meant they said no-one reported having contracted covid whilst on retuimab.
Indeed. I think we are all being very cautious and have avoided it so far 🤞🏻
Yes being on this drug is certainly still making me cautious.
I’m the odd one out..l am the healthiest I have been since having Rtx infusions…in fact…I can’t remember when I last had a cold.I am careful….but I do go out to shop & meet friends for walks etc.
I did have flu…..around February 2019….but don’t know for sure…I didn’t see a doctor…just stayed home feeling sorry for myself.
But a couple of months later I developed what was diagnosed as a Post Viral rash…but as CV wasn’t publicly around then….no tests were carried out as to which virus caused it. But now a month or so after I have the Flu vaccination,I get a shadowy form of the same rash. I was going to have tests early in 2021..but the CV19 vaccine side effects scuppered that,
Please take extra care because Rituximab is such a sledgehammer on the immune system compared with any of the other RA drugs. You are extremely immune suppressed. My antibody test, organised by my GP showed a result of <0.06 so almost none!!
I’m on Rituximab too so wear an FFP3 mask if I go out (and that’s rarely other than for medical appointments) or when I go to the front door. I only mix with people I know I can trust to keep me safe.
I don’t think there is any published data yet on how badly Omicron affects people like us, or how well the antiviral drugs work for us. So I recommend you keep yourself safe for a while longer.
I believe any infections we pick up rely on our general health as much as being on Rtx.If you do have other underling conditions as well as RA….they must surely contribute to overloading one’s immune system & make you more likely to pick up stray bugs & viruses.?
Hi Mike, I take Abatacept and am still very cautious. My GP recently advised that as I am classified as severely immuno suppressed I should still take full precautions with masks, hand washing and social distancing. She recommended avoiding crowded places as unicorn is so transmissible. In addition my son is an experienced doctor who is currently studying public health and his advice is to avoid crowds and wear a better quality mask indoors, preferably an FFP2 mask like medical staff wear when treating Covid patients.I guess we all make our own decisions, I am naturally cautious and trust my GP and my son to want the best for me.
Yes. I’m on Benepali and Methotrexate. I’ve had three jabs. Got Covid mid December. One day in bed, next day in front of the telly and two days a bit washed out. Just like mild flu or a bad cold. I’m thrilled to know how easy it was having been terrified previously.
Hi I have just had it after trying my best to avoid it like everyone else for 2 years.
I am currently on the biologic rituximab take 12mg of prednisone a day and self inject 25 mg of methotrexate.
I had virtually no symptoms at all. I was given an antiviral infusion 2 days after testing positive and was absolutely fine.
Hope this helps to put some people's minds at rest in what has been a difficult time for a lit of people
Justin
Hurray for anti virals.
Thats great to hear
Fantastic to get the anti virals. Must be a confidence giver after the dreaded positive test. I have my pcr package in the cupboard and a hope that anti virals are offered but read recently that you get a phone call to discuss a decision of whether to give you them or not? Was the this the case? I’m on methotrexate.
My pcr test was immediately flagged on the system and I received a call from the antiviral team at the hospital to discuss my medication. The rituximab is the big problem along with the steroid dose. I'm not sure if you would be offered an antiviral just for methotrexate. Hopefully someone else maybe able to confirm.
Glad it wasn’t too bad for you. Thank goodness for the antivirals!And thank you for telling us about your experience.
Personally i cant answer your question 🙏 but taking the same precautions and not seeing anyone without them having lateral flow (and me) beforehand. I have asthma too. Gives me some peace of mind. When I saw the RA nurse before Xmas she told me two people in hospital at that time on Ritux. No other details.
Morning. I am on weekly injections of Benepali and contracted Covid 9 days ago. My symptoms were a slight cough, running nose and a slight temperature for one day. It was just like having a regular cold. Felt perfectly ok all the way through thank goodness. I stopped the injections and will start again now I have two negative tests. Di
I’m on Abatacept & caught COVID last August after my very first trip out after shielding for months. I was really unwell for 4 weeks in bed for first 2 but didn’t need to be in hospital which I was grateful for. I guess it was Delta & not Omicron though. Unfortunately I’m still unwell with severe fatigue which has totally taken over the little bit of life I had so not seen a soul for months now. GP did regular bloods & has no ideas so I’m stuck like this in limbo. So please take precautions & stay safe x
Hi, first time I had covid in July was in hospital for 3 weeks and had covid pneumonia. I had my last Rtx infusion November and since then have had pneumonia issues and on 40mg steroids daily and oxygen.
Got covid for the 2nd time in January. Had to go to A&E on day 3 but then had the antiviral infusion on day 4 which seemed to do the trick. My respiratory dr thinks it kept me out of hospital.
I think I will be honest here,myself and 3 colleagues got Covid from the Nursery where we work.Age range 35 to 65., all fully vaccs.They have no underlying health conditions.i have Ankylosing Spondilytis
They are all still really poorly on day 9, I am day 3, though normally very stoic, I do feel really grim, it's like really bad flu.Nausea, fever,terrible head exploding cough, snotty nose, upset tummy.AS.is horrendous and allergic to paracetamol!
I took myself off Etoricoxib and didn't start Sulphazaline last year in hope I wouldn't be so susceptible to Covid, so not on any meds...
Now, being positive, I am older( though very active even with AS) and had severe glandular fever as a teenager so always get colds....
Other colleagues have had Covid with little or no symptoms.So, as long as you're vaccinated you won't necessarily get Covid, or get it badly,seems very individual, and we all got direct hits from small people!
Good luck, keep safe, and apologise for wordiness,as you can tell, I feel rough but I'm most definitely still here!
Hi I am on Benepali and sulfasalazine , but because I also have Mylodysplasia, I am still shielding , buy any shopping onlineYou have to look after yourself.
The government have forgotten about us ,
I take the view that we still need to be careful because it’s still all unknown and since Savid Javid was appointed very little information is sent out to the group which used to be clinically extremely vulnerable and is now known as severely immunosuppressed. We seem to have been forgotten about now so we need to protect ourselves.
So carry on with your own precautions and don’t feel self conscious about it. Without being too boring explain why you are doing it.
Good luck
I had omicron in late December. It felt like a cold. I wouldn't have known I had it but my son in law tested positive.
I should add, I take Leflunomide and hydroxychloroquine.
Wow, thanks for all you're replies. I take from them that we don't know for sure how Omicron will affect us individually, so there is definitely no change to our situation.
I am hearing a lot of people now aren't so worried about catching Omicron, so "being careful" for us might be a bit more of a challenge!!Thanks again for all your replies. Xx
All I can say is that I have Long Covid. I have been ill since March 2020. I was improving until I got another virus in December which hospitalised me for 10 days. I was only let out then because there was a positive Covid case in the next bay to me. I have been having care at home since. I fear getting anything at all as I have severe asthma also which was my main issue in hospital. We are all different however. I think we have to assess our own risk in the absence of any firm guidelines now.. I won't be staying home forever however.
All of these responses to your question make for interesting reading. First of all I live in the US but was born and raised in England. I am always interested in the differences in the health care between the US and UK. I am a Rituxin patient. My last infusion was in June of 2020.(I have decided to go to a different treatment because I now believe it is unwise to take a treatment that impacts your immune system so much)I found out that even though I am vaxed and boosted, I had zero antibodies when I was tested last October. Have been shielding ever since. I am getting a B cell test Friday to see if I can get another Covid shot .
I read on this page how Rituxin can help people with RA but it has not helped me a lot. I still have a considerable amount of pain. I do not believe it is worth continuing with that medication.
I have an appointment with my rheumatologist this month and I will ask him what he knows about his Rituxin patients and severity of Covid infections. My guess is he will have little information! I was never contacted about taking an antibody test despite taking Rituxin .My concern all along is the strong possibility of being hospitalized if I get Covid. Rituxin knocks out your immune system so it would make sense to me that you Covid would make you very ill.
I was interested to hear that in the UK you can still get antivirals by infusion. As of last week Dr. Fauchi has discontinued all monoclonal antibody infusions here in US. It has infuriated several governors who had set up clinics for the purpose of infusing patients and keeping them out of the hospital. The Covid epidemic has turned very political here as I am sure it has in the UK.
Can I just say, my first 2 Rtx Infusions didn't do a lot for me, but the 3rd Infusion last February has totally worked. I have had no pain since about last March. I am starting to feel a few signs now but it has worked for me.... eventually. I nearly gave up on it. But, we are all so different!!Ive managed to avoid the virus so far, but I think it will be harder now as it seems this lesser Omicron variant has made people not so worried about it, so they are not as cautious. Life's a gamble isn't it.
I was just at the doctor today and I asked the same question!!!! I was thinking it is no big deal to get Omicron. Here in Canada if you get covid and test positive at home you are to phone to get a lab test. If it is positive then they give you that new treatment that is given within five days of the first symptom. My doctor said one of his patients on biologics tested positive and couldn't get the treatment as no one was calling him back and got so sick he is in the hospital. It has been two weeks. He was vaccinated. So, my doctor said try not to get it and wear a mask.
I'm still being extremely cautious, but sometimes feel cowardly! I'm on MTX and a steroid and had my fourth vaccination yesterday. I just can't see the point in undoing two years of being careful by being careless now. I am fortunate in that I live with my husband and we get on pretty well, considering we've been married for fifty seven years, and I see two of my sons regularly, after they have done lateral flow tests. One of the issues locally, here in SE England, is that a lot of Omicron cases are not showing up on lateral flow tests, but do on PCRs which are being discontinued in most cases. It's a conundrum.🤷♀️ Take care, I guess we all have to do what we feel is right for us.
Im on adalimumab. I tested positive a week ago for Covid and today was my first negitive test. tbh it was only the test that made me aware i had it. Didn't have any symptoms apart from being a bit tired for one day. But then again thats not unusual for me due to my Job. I've been triple jabbed.
Spoke with my Rheumatologist last week: he said that people on methotrexate seem to have fared well if they had COVID. From what I’ve read if you are on rituximab you are advised to be careful. I am on methotrexate and humira so being careful as during 2021 hospitalised on 3 occasions and now have diagnosis of 3 different heart conditions. My cup runneth over😀
Yes, Its not worth the risk and I'm still being careful. I have thankfully, managed to keep clear of it. I feel for you with your luck so far.I expect the length of time (13 months) since the last Rituximab infusion is probably a big bearing on how it would hit, but I am flaring well now and trying to get my next infusion sorted, will need even more luck now!
All the best
Mike
Has anyone with RA and is CEV had Omicron and feel vile?
Methetrexate and rituximab
Starting yet another Biologic
Biologics and methotrexate
