Very anxious now regarding the vaccine they gave said there is no evidence that Ra patients will have some or any antibody response to the vaccine , had Pfizer 7 wks ago and my instincts told me to be worried about leaving the second for 12 weeks for CEV people immunsurpressed auto immune kidney transplant lists etc now there is evidence in the cancer trial that showed hardly any response to first and people left 5werks no good response but the patients given as it should of been 3 4 weeks had fairly good response ! Surely they knew we at least should of had the Pfizer at least as it should of been given even Pfizer CEO said 6 weeks at the most but not happy even for people with good immune systems ! There are trials now Octave to check efficacy for Autoimmune but may take months well it will be to late ! Are we to shield for another year as even my 90 yr old neighbour who can and has been living some kind of life, Gp even agreed was hoping would change policy at least for CEV patients I despair now as fear to late now after 7weeks could of had some protection at least given properly but now feel will we ever be safe! Chris Whitty recently did not help saying that there will still be deaths from people where the vaccine did not work etc well is that us are we to becsactificed
No Antibody response first dose for Autoimmune R A p... - NRAS
No Antibody response first dose for Autoimmune R A patients
It doesnt say No antibody response . It says some . But they dont know however they presume from other previous vaccine work that we will have some protection but more importantly should not get very I'll or hospitalised. I'm certain the scientists have it in hand. Our advice was always to shield till end of March and not to change our behaviour after vaccine anyway.
So I'm sure they will update us before that time.
Not to sure what good worrying will do, sadly. I'm not even sure that anyone really knows anything yet and I had the Phizer and was ill for weeks. I was told an antibody storm as had an infection so was on antibiotics and no RA meds. So antibodies went mad to attack joints and then the jab ! I also have kidney failure and yes transplant patients are being given it 4 weeks apart but those people are on very high amounts of immune suppressants far in excess of that taken by RA patients. So whilst I do understand your concern I do think its very complex and the link between kidney patients and RA patients is not really a fair comparison. I don't know about Cancer links but any protection is better than none. I also don't think we or anyone else is being sacrificed and of course more deaths will occur as society opens up. It's the nature of the highly infectious disease , and is all we can do is protect ourselves by shielding if advised too. We live with flu in normal years and have flu jabs which work, so why is there any reason to suppose if one ordinary flu jab works that the covid one doesn't?'
Thank you for your reply did you say that you had had it 4weeks apart due to your kidney failure at least that's good news.?
No its only 4 weeks apart for transplants I'm 10 % off that yet so I'm 12 weeks as most others. It's worth remembering that kidney patients comprise the majority of covid deaths as it does cause kidney failure anyway. At the start of the pandemic it was Nephrology who made it clear very high death risk and keep shielding and don't get it. lol
Thank you I was asking as my husband is a kidney transplant patient and has to wait 12 weeks for second jab in uk
I'm in Kent we have a really good Kidney patients group going on Zoom. I hope your husband is called soon and stay safe. xx
We are nowhere near as immunosuppressed as cancer or severe kidney or transplant patients. Just do what we are doing, I feel like you. If we need a jab earlier the professors will tell us !!
I really appreciate what you are saying.I have auto immune conditions and an Interstitial lung disease.
I was really worried about the concerns you have.i had CBT just before Christmas,, and I’ve now decided thatI.about what I can’t change.
I’m not being flippant,but
I need to attempt to have some sort of life,what’s left of it anyway. Hope you are ok.
Can I help you frame your question in a more useful way, so that answers might be elucidated from forum members?
I have been meaning to ask this question anyway.
For those of you on Rituximab, or other immune suppression drugs, can you tell us specifically what your doctor has told you about receiving the vaccine?
For example, I am currently in the middle of my “set “ of Rituximab. I take it for a multitude of autoimmune diseases- lupus, Antiphospholipid syndrome, RA, vasculitis.
I take 1000
mg every 12 weeks - but it’s given in sets - so Im given 1000mg two weeks apart- every 12 weeks.
My rheumatologist told me to wait two to three weeks after my “set” to get the vaccine.
I had my infusion one of two ( 1/2) this Monday, March 8. I go back for 2/2 on the 22 of March. So I’m going to try to set my first dose of moderna or Pfeiser in mid April. Or maybe a single dose of Johnson and Johnson will be available in this area of Texas by then.
Texas has been slow rolling out vaccine. Our horrible ice and snow storm did not help.
No idea about usa but this is advice here
creakyjoints.org/living-wit...
Also lots of replies on this topic if you press the search magnifying glass above and on nras.org.uk
Or speak to your health care provider xx
In the UK. Rituximab is administered completely differently from in the USA....so what we are advised will be very different.
It’s administered differently here depending on disease , and patient to patient response to treatment.
I’m having more frequently now than I initially was because I continued to clot.
I take Rituxin and received my second dose of Moderna 9 days ago. I felt tired the day after but otherwise no reaction. My rheumatologist told me my Rituxin infusion should not be given less than 5 weeks before or after the vaccine.
Try not to worry and keep shielding to stay safe. The scientists need to have more data to analyse to confirm what’s happening and how protected the CEV will be. If it’s thought beneficial I feel sure we will be given another set of two doses with the ideal spacing between them in due course.
I hope so thanks
Who said no antibody response? I’ve only read that there is as yet no data to show how effective it is, or otherwise. And that the vaccines MIGHT have less of a response in immune compromised people.
But the thing to remember is that a single dose can provide 60-85% effective protection in ordinary people, and we only need a tiny bit of that protection to stop us dying - which seems pretty likely. And that’s the important thing!
Thank you for your positivity 💗
There has been so much coverage of Covid, and such heart breaking stories of people dying that we have all become terrified of it. I try to think of Ebola instead, which is a truly scary disease. Depending on who you are your chance of dying is up to 90%. Yes, 90%....
Covid in comparison is a pussycat. The average death rate in the UK is under 3%. With Ebola you have a 90% chance of dying, and with Covid a 97% chance of living!
Of course if you are older, frailer and with severe comorbidities your risk goes up. But only to around 15% on average. Not good, but still an 85% chance of living... and only need a teeny, tiny bit of extra protection to get that figure right back up to 99.99%. Hang on to that thought.
I will, I thank you for your wise words 💗 and I am just about to post something else. I have a worrying comorbidity due to background immunosuppression on Rtx. Feel the time is coming to talk about changing. 😑
Until we have proof and data there is nothing to suggest at the mo that we won’t have a decent response to the vaccine. I do feel though as someone who has Rtx infusions and is known to repopulate B cells more slowly (great for the RA but not for immunity) that I may have beggared up my vaccine efficacy by a shortage of B cells, although I waited 22 weeks after last Rtx before my first vaccine. I do know it’s other parts of the immune and mature plasma cells that store antibodies to trigger the immune response too. One could go mad pondering and not be any wiser until a reliable test proves immune response to both vaccines. See my post coming shortly. x
Thank god you are on this forum is all I can say HH. Thank you.
I agree x
She’s referring to the recent study on cancer patients, which talked about them in terms of being immunocompromised (true), so now those with AI are extrapolating to themselves, understandable with all the fears. The numbers showed greatly reduced antibody response after jab 1, which actually snot up after jab 2. OCTAVE will show a lot. But, the study is making people rethink the 3 month strategy (for Pfizer).
Thanks...didn’t see that one. Since we are no way comparable to cancer patients I tend not to read about it...
Agreed and frankly my behavior isn’t changing until rates are extremely low. I’m more concerned about long COVID and always have been (which you can get even from “mild” disease.) This is the media coverage of the study for reference: google.com/amp/s/www.indepe...
Immune compromised- not the same as immune suppression. I assumed she meant suppression?
I didn’t read the underlying research, just the link to news report. And it doesn’t say whether the patients were in active treatment or not, so can’t tell. But in general yes, huge differences in the degree to which immune system is affected so much more likely to be talking about suppression rather than compromise.
I read yesterday on an FB site that someone with RA on Rtx had received the first vaccine and then after another month had antibody tests and they showed nothing. She was concerned that her B cells were not there following her last Rtx infusions, so she didn’t mount any immune response. She had only had one vaccine so should ideally wait for the second one and then test for immunity three weeks after that. She was very concerned over the 12 week wait as many people are. (I feel we may asked to do a booster in the autumn. We don’t know though as it’s uncharted waters.)
I also read recently from scientists and medics on reputable UK websites (bmj for one) that mature plasma cells can prompt a decent immune response if B & T cells are not doing as they should in our blood and tissues due to our immunosuppression. I have just had the usual RA blood tests plus B cell/IgG/M/A tests done which my nurse wants to monitor more for my med (Rtx) and I believe that it is the IgG cells that are the ones they test primarily for Covid antibodies. They are the most abundant type of B cells in your body. The Covid Antibody test says yes or no to if you have them and the recently advertised blood tests online apparently give you the number of antibodies, just as my RA blood motoring results do, but what we don’t know yet is what is the ideal number of our IgG cells to satisfy a good enough immune response to the Covid vaccine?
Rtx patients have IgG, IgA, IgM monitored to check Rtx is working. My IgG results are always lower end of normal. Not outside the lower range though. I have my last lot of blood results from December pre Covid vaccine from December. Then I had them done yesterday. I am hoping these will show an increase in antibodies since my first Pfizer on 10 February. My Nurse is trying to find exactly when my B cells repopulate. It isn’t possible to differentiate at the moment between antibodies due to having had the vaccine or unknowingly had the virus, for those trying to find out if the vaccine has worked or if they’ve had covid unknowingly.
If I show no response to the first vaccine in so far as my B cell antibody blood tests don’t increase then in late May I’m due to be monitored again for B cells. I’m not sure what they are meant to increase by to show vaccine success, which will be why my nurse asked me to let her know when I had the vaccine. I waited 22 weeks till after my Rtx before I had my first vaccine. Almost six months, but believe my B cells repopulate more slowly. I can’t tell by just by looking on my blood print out figures for IG as there are more involved results you don’t see behind that figure and my nurse doesn’t get access to them, only the rheumy. We wait and see what data transpires and hope the 12 week wait hasn’t been detrimental. I asked my GP nurse if any vulnerable patients were being allowed to go sooner for the second vaccine and she said she’d heard nothing so far.
It would be good to have a detailed conversation with an immunologist to understand these things better...
However as I understand it, the immune system reacts to infections, so what your blood test shows today may not be a true indication of how it will react if you pick up the Covid virus.
This is a better explanation:
“But this does not exclude the existence of memory T and B cells, capable of re-emerging from their dormant states to protect against re-infection. In other words, the antibodies that B cells make during initial exposure disappear in a few weeks, but the memory cells generated as a consequence of this persist for much longer.”
Thanks
Hi allanah,I do appreciate your concerns but I am no expert in this field so I wont attempt to advise you on the matter. However the only advice I would give is to have the vaccine and to check out the website attached which has the answers, the site was given to me by my rheumatology nurse. Check it out lots of useful information.
I went to hospital this week to have bloods taken to be studied over the next three months.
The following day I had the Astra-Zeneca vaccine, they will take more blood at 4 weeks later & then at 3 months later so will be interesting to see how much protection I have.
The rheumatologist did say that they wasn’t too worried about the TNF biologics.
I take adalimumab & methotreaxate
With no other health conditions other than RA.
Cool, sounds like your part of a study. Will you keep us updated in a new thread when you hear back?
Yes I will update once I’ve got the results
My sister has also been enrolled in blood monitoring trial, but told she won’t get her results as everything is anonymised.
Was your sister already enrolled in blood monitoring trials before COVID ? when I was first diagnosed I enrolled into radar research programme 5 years ago, that’s probably why I got the letter, my rheumatologist did say I may not find out the results but then said actually when It gets to the 3 month mark keep ringing up & asking for the results as will be able to give you some idea of how effective the vaccine is, so we will see but I will do a post on it.
Hers is specifically looking at antibody responses to the vaccine.
I’m having my B cells/immunoglobulin checked every couple of months at the moment with extra blood tests, but not as part of a trial .. my nurse knows my concern that I often repopulate my B cells more slowly so I wanted to see if she could pinpoint exactly when they return for me as it isn’t always obvious pain wise. I was told a rise in my igG and IgM would show vaccine antibodies but not fully until 3 weeks after the second vaccine. Thank you for agreeing to help in these tests, and I this will be very beneficial to so many to find out responses of RA immune immuno-suppressed patients.
It’s good there checking you regularly & Thank you I feel like I’m doing my bit to help with this awful virus & will post once I find out any of the results.
They way I look at it is I’m severely immune suppressed and I’m hoping that the vaccine I had has given my zero immune system a good kicking and maybe with a wing and a prayer might get it working again after almost 8 years without one. Maybe I’m being a little naive but ever the optimist but it should remove the death sentence from me even though I’m still shielding as a precaution. Whenever I get my second dose is ok with me because I don’t suppose I will ever know if it’s worked or not until the NHS gets around to sorting the backlog.
Hi Leics, I recall you said about your immunity ... or lack if 😢🤨 and I do hope the vaccine did wake up your immune. Can you ask your rheumy nurse to do blood tests after the second vaccine to see if antibodies are present? They are doing something similar for me to try ascertain more closely when my B cells repopulate.
Yeah perhaps I will ask if I ever manage to get through to rheumy or immunology because I suppose it’s more of their specialty than rheumy. Had my last appointment cancelled though and no plans for a new one so another waiting game. If I ever find out I will let everyone know lol.
This is a common theme on the Helpline at NRAS. The BSR (British society for rheumatology) and ARMA (Arthritis and musculosketal alliance) both agree that 12 week gap between vaccine doses is recommended in everyone on medications for the treatment of RA. The only time they are recommending to decrease the time between doses is for those on Rituximab awaiting their next dose and those about to commence treatment and delaying it will cause a flare, which increases the risks associated with COVID.The research is showing that it the body is able to form a a better response if the 2nd dose is given at 12 weeks rather than earlier.
As many people have said, the advice is still to continue to following the normal precautions until after the 2nd dose when we will know more.
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