Has anyone read the Daily Mail online today? There is a piece about Ritux saying the vaccinations offer no immunity for patients who are on it. Also refers to patients with blood cancers, who are not covered.
Coincidentally had messaged my RA nurse yesterday wanting to know if I should continue to take care, as country is opening up. I now have my answer 😓
Well it is the Daily Mail !! .. but the doctor who is on the Facebook NRAS Octave vaccine and immunosuppressed research committee this week on the study discussion with Claire and Alisa of NRAS, said that it’s different re the the immunity for patients on Rtx and steroids, but he wanted to wait a few days for the full findings etc., before he says any more.
I always felt I would have to go back to the start and re do my vaccines due to Rtx blunting their efficacy. I waited six months after my last Rtx in early September 2020 before I had my first Pfizer on 10 February 2022 an the second one 6 weeks later. I know my B cells are often much longer than 6 months to repopulate, but my nurse said go for it re the vaccines at 6 months after as this was the “text book recommendation” of waiting this long. She said it could be more dangerous not to have them and try wait until I was sure by means of blood results that my B cells had repopulated sufficiently.
I did the Roche Spike protein antibody blood test at home end of May and it may have been too long after my vaccines and that antibodies been and gone, but I still feel it was that my B cells had not repopulated and I didn’t mount a good enough immune response to my vaccines. I’m now having my B cells monitored more regularly and as soon as they are back in sufficient amount I’m going to repeat my vaccines. I had no antibodies detectable from the Roche antibodies test.
I told my rheumy all this two weeks ago and she said ... act like you’ve not had your vaccines. Still shield. You’ll need to repeat them. 😑 x
Hi again ... it is possible some Rtx patients could still mount an immune response without presence of B cells. 🙏🏻 This had been mentioned too in a recent NRAS Zoom chat with a high profile London rheumatologist. We just don’t know for sure as yet.
rheumatology.medicinematter...
An interesting read, but I had Astrazeneca 🤷🏻♀️
It’s such a tiny sample and in other articles I’ve read re vaccines blunting the vaccine efficacy it referred to AZ as well as Pfizer. 😑 We await to see what the official news is from the Octave study. Out very soon the doc said on the NRAS Zoom FB chat.
I’d wait for proper results. The Daily Mail is not renowned for accurate reporting, and also tends to dramatise everything. Yes it may well be that people on Rituximab are less likely to offer full immunity, but doesn’t necessarily mean none of the patients will get any immunity.
I’m a Rituximaber. Sadly my antibodies were undetectable, but as I said too .. it is the Daily Mail. 😑 Would prefer to see the Octave study recommendations.
Just a word of caution, I was told that the antibody test only shows antibodies if you've had covid-19. It doesn't show antibodies from vaccine xx
I don’t think that’s the case. Mine were positive on the Roche test and, as far as I’m aware, I haven’t had Covid 19. My friend is on same immunosuppressant drugs as me for same overlap and hers were twice mine and she hasn’t had Covid 19.
I just tried to get a private antibody test to see if I have had Covid, which I think I did early last year. Right at the bottom of the form it said dont order if on immunosuppressants ☹️
I did say I was on immunesuppressants earlier in the form and it didn’t stop me from paying and submitting. So I just ignored that advice.
However I’m aware that my Sjögren’s related high immunoglobulins (polyclonal gammopathy - including high IgG) might give a false positive so I’m continuing to be extremely careful - especially as my dosage of immunesupresant has since been increased to maximum and I’ve had a large IM steroid injection.
But the result at least made me feel a bit less paranoid when I’ve had to spend the last week in hospital having infusions (a powerful vasodilator for systemic sclerosis - so 3 very long days). I still wore my mask and re-opened the windows which the elderly gentleman next to me (2 metres but not very observant of social distancing or need for ventilation!) closed early on day 3. It has just made my anxiety a bit less that’s all but I’m still being extremely careful.
Poor u….u certainly have a lot to contend with.
The one I looked at was on Supadrug site…will have a look at Roche. Expensive so didnt want to waste my money. Take care
Thanks. The one I bought was through Lloyds pharmacy online. I knew it was the Roche one having done my research via friends on the Lupus UK HU. It was almost £50 but this included return prepaid postage and online tracking and message alerts with results.
Thanks… that was the same as Supadrug… will have a look.
Testing for All where I bought my Roche test from told me that I would likely have a reduced level and when I had no antibodies Tfa asked me to do an online questionnaire about my med etc. My test was £40 plus £8 return postage/online tracking fee. The first test came back void as I didn’t have quite enough sample so they sent me another kit foc. They were really professional when I spoke on the phone and emailing me.
Thanku
Just received my test kit. Probably a silly question, but I have a cold at the moment should I wait until that has cleared to take the test or is that irrelevant. Thanks
Not silly at all . Totally relevant and sensible! If my memory serves me well from what I read when getting ready to do my test, if you have a cold then you could get positive antibodies as a result of the cold as the common cold belongs to the same family of viruses that the Corona one does. I would check if there is a facility to phone or email the testing company (as mine had experienced medical people available for queries on the phone at Testing for All) and I’d ask them. I’d wait to do it till the cold has cleared to be entirely sure if it was me.
I had trouble getting blood the first time and I didn’t get enough so it was voided and they sent a repeat kit foc. before hand. I yomped round our large garden for 15 minutes non stop and did some weights (small ones!) over my head and bicep curls and arm raises to ensure this time my blood flowed and it did. Also do drink a big glass of water just before and also you should submerge your hands and forearms as much as you can in a sink/bowl full of hot water to get the blood flowing. Do this for over five minutes. I did that the first time with the water but it wasn’t enough for me, but increasing the heart rate and blood pumping worked fine. Hope this helps. Good luck. 🙏🏻
Thank you will wait then… it says I have 2 months to use it. My long suffering hubby will have to do my test for me as my hands r crippled… I will try and bob about a bit before tho, get hydrated and hands in water🙆♀️😂
The hands in hot water is apparently really needed to get blood flowing and before that if you can do some movement ... stretch your fingers .. open and close them or spread them of you can’t make a Fiat and lift your arms up and down or out to the sides so the blood goes to the fingers, before doing the hot water I think that will help. I would not get up and do the test from being stationary for ages. My instructions said you should stand to do it too. I leant against my table. Be as mobile as you can first. Get blood pumping! (Maybe have a shower first?) If you’ve no need to know now I would wait till your cold has fully gone. Sorry about your hands. Mine are deformed but I haven’t lost dexterity so could do it myself as my hubby would have been too upset. x
It will b a funny sight! Ha ha.
I actually draw people’s dogs…. Amazing really when I cant do buttons up and do essential bits and bobs 🥴
I’m an artist and I haven't lost any of that with my hand and still do incredibly detailed work but some things like opening the door/key and twisting things and opening packets are hard.
Exactly!!
Its a lovely hobby for me… have to pace myself and cant do deadlines
I’m glad you love art too and enjoy drawing dogs. I can’t draw dogs .. not at all but can draw cats and birds and frogs and insects !
We all have our specialities.. lol
U mentioned private messaging me…. Where will that be?? 🤔
Sorry Evie my error, I meant a PM to Skinny Cappuccino re the antibodies test I did. x
I believe that’s a different antibody test. The PCR gives you a positive or negative result. It’s a SAR’s 2 antibody test that states the actual amount of anybody response.
Yes the Roche spike protein antibodies test is a quantitative one. The company I used can’t interpret the level of antibodies for you as yet, but tell you how many the test recorded.
Thanks. I see my phone went onto predictive text. Oops!
Yes and although they can’t tell you as yet what the required level of antibodies are deemed to be the correct level for good immunity, they can tell you you’ve got a lot or a little or none.
Well that’s good then. At least you know you have some immunity x
Not exactly ... mine came back as no antibodies. Glad if others have got what they wanted to see but for me it’s back to square one and repeat my vaccines when my B cells are back. Could be October. x
So sorry for you….have had similar probs over the years….just want a ‘near normal’ life dont we 😖
Will let u know what my results are when I do the test
The company website info said it is to test for antibodies from natural infection AND vaccination. It is the Roche quantitate spike protein antibodies test so is the correct one. xx
Hey NK - I'm really sorry to read that you didn't any benefits from your vaccines 😔
Do you think I should get an antibody test done? Seems like in the UK this is routinely done for immunosuppressed patients?
My rheumy just asked me if I got my vaccines but nothing more. I tried to find some information online and it seems that on baricitinib, you might not build up sufficient antibodies either! I'm freaking out a bit now because a lot of people (colleagues and customers) don't bother with masks anymore. And now I'm back on prednisone 😟!
But I don't want to bother my rheumy with this because I've had to contact/see him so many times already the past 2 weeks 😕 I don't want to be an annoying patient.
You can get an antibody test done privately at a more or less reasonable price and get the results in 24h - thinking about mabye getting this done tomorrow... What advice were you given while you wait to have the repeat vaccines?
Best,
Christine 🍀
I’m in the middle of a PM to you Christine. I’ll send it as soon as I can and answer you too re this post. xx
Hi SC, thank you. 💗 Yes it’s back to square one for me .. the plan is: get tested every couple of months for B cell repopulation (going to have it done in a couple of weeks) and when they are back have some repeat vaccines. Then change RA med 😢😑 around October once Rtx would be due again as my Rtx is causing low igG/bronchial side effects. If I am known to repopulate B cells slowly and I need a Covid booster each year then I could be in this place again where they don’t work again, as even though I waited 6 months after Rtx I obviously hadn’t got my B cells back. Ideally you’d have your B cells tested before having the vaccine. So I’m going to wait till they’re roaming around again more and then go for the vaccine. I’m writing to my GP too to alert them to what has happened.
I’m still replying to you separately on PM, but just thought in case anyone else wanted to know I’ll reply here too. No, we don’t have any routine antibody tests here in the U.K. No, they don’t get done by GP or consultant as yet. They’d be queuing up like mad I think! Mine was a private one I got from a company called Testing For All. You need to send them a blood sample back to do at the labs. It needs to be the spike protein quantitative antibodies test. Mine was the Roche test and cost £40 plus £8 postage and on line tracking. The company are excellent.
If you’re on a JAK then it could have affected the efficacy of your vaccine but no one knows for sure how much on this. Creakyjoints website has a lot of info on meds and efficacy.
Personally I’d bother the rheumy as it’s important. Ask him. It won’t take long. I would say this .. if you have the antibodies test though , be ready for what you’ll decide to do if it is negative re antibodies. I knew mine was negative having told you all the B cells going on a long holiday scenario. Even after six months too after Rtx. It may be that once you’re settled on your new med you can have a vaccine booster? Once no more JAK. Speak to you soon on PM x
Thank you NK 💝 !
I really hope your B-cells return as soon as possible, must be such an upsetting situation 😪 And I hope that whatever the new medication is, it’ll work as well as Rituximab but without all the side effects…
I think this test is exactly the one this private lab is offering – did you know Roche is a Swiss company based in Basel 😉
It says on the lab website that you can show up without an appointment and get it done and get the results by email. In a way it would be a relief but I don’t know if there is anything I can do about it if I don’t have antibodies because I can’t avoid work and even though I keep telling people to put on their masks (they’re still mandatory inside of publicly accessible buildings), they don’t always listen. I even put up signs in three languages everywhere! But by now I’m too fed up with them to bother at all, I just leave the windows open all day. I suppose if the test is negative, I could try pausing my meds and ask to get the vaccines done again. But of course I can’t just stop the Prednisone 😱 (and I don't want to - it's working so well).
I know you’re right about asking my rheumy about it. I just feel very, very guilty for taking up his time, he’s seen me three times in the last couple of weeks without a previous appointment. He will contact me soon because he’s waiting for the sarilumab (Kevzara) delivery and said he’ll phone me once it’s arrived so I can call the nurses for my first injection.
I try not to worry so much but no one here seems to talk about the immunosuppressed – it’s all about those who don’t want the vaccine and how it’s their own fault if the y fall ill. But how about those that had the vaccine but still aren’t really protected??
Have a very nice evening and thank you,
Christine ⭐
Yes I did know Roche were in Basel! 😁
Annoying that your co workers don’t wear masks and they don’t really understand who needs to be protected and they should. 😑
I just sent you a PM. x
Thank you for your kind wishes SC. 💗 I do have a plan but it’s not going to happen as fast as I would like. I’ll keep prodding politely and get things done as fast as is possible re the B cells but if they ain’t back yet they ain’t back!
Don’t feel guilty for seeing the rheumy. He recommended the change of meds so it’s inevitable you have to have appointments to talk about it and your foot scan too. x
You certainly understand it all….. double dutch to me. I did a 4 week post Rtx blood test…left a message for the nurse last week to check it, but she didnt get back to me. I cant even see the blood tests on my Patient Access site. They really arent good communicators. Havent seen/spoken to Rheumy since I paid privately in 2019 ….he saw me then!
Hope your plan, goes to plan and u dont have to suffer too much in the meantime.
Without meds I am in a wheelchair.
Take care and will think of you when i eventually do the test 🤣🤣
I hope you can get a better service than you have had. That’s actually disgusting Evie ... no rheumy since 2019 and only as you paid. If all is ok then they probably think .. if it ain’t broke don’t try fix it, but you need to know the blood results. I’m still trying to get on those websites!! Something has gone crazy there on those sites as I’ve done all I should! 😝
I don't think it's routine 🤔 😕 I certainly haven't been offered one, and I've asked both GP and rheumatologist who have both said no.
Hello Moomin8 and thank you, that's really helpful! I think I might have confused the UK with Germany. A friend of mine whose husband is German (and a doctor) told me that immunosuppressed patients have their antibodies checked after the vaccines - she was surprised that we don't do that here in Switzerland.
And it seems to me the UK is really well organized regarding the vaccines so I just assumed it was done!
Agree about the Daily Mail - take it with a large pinch of salt.
I did hear, or read, recently that some results from the Octave study should be coming out very soon, but the full results won't be available before the end of the year. So patience is still needed.
I shall continue to be cautious after 19th July - no partying for me!
Thanks……I am not as informed as you…..just have the infusion and pleased it stops my pain. Will b sensible when i go out 😷
Yes take care 💗 I’m researching as I shall have to change from Rtx as it’s causing side effects.
Oh sorry to hear that…its my fourth and so far so good 🤞
I started Rtx April 2014. Had five excellent years of no side effects then the last three I got lowering immunoglobulin igG, so need to change to something else. Side effects now too troublesome. Great shame as it’s given me the best mobility ever and got rid of all inflammation. We are all different and react to meds in many ways so no reason to ever think you will be the same as anyone else. Hope you continue to do great. 💗
Thats a shame…my last two lasted 8 years. My Rheumatologist said there are more to try
Rtx isn’t my first med .. I’ve had others for 8 and 9 years respectively and 3 short lived ones which didn’t do much! Rtx got me moving at a time nothing else would. I am ever grateful for that. There are so many new meds all the time so I don’t think we’ll ever run out of options! 💗
Hopefully not🤞🤞
There are so many new ones I think we’ll be ok!
Thank you for that, I'm on retuximab and not sure yet how we might fare. My 2nd vaccine was 7 months after my retux infusion, will wait some well informed results as well.
I would never trust the accuracy of any scientific articles in the Daily Mail and prefer to wait for the Octave study report which hopes to be released soon, according to Professor Iain McKinnes.
Here's a link so you can watch it: facebook.com/91098402299/vi...
Like Nk, I'm also on Rituximab and continuing to be very careful, as advised by my consultant when we agreed I could have my next infusion eight weeks ago. If mask wearing becomes optional soon I shall continue to exercise my option to wear mine and keep my distance from others if I don't know where they've been!!
Definitely. Very difficult when grandchildren come to stay tho
I know it's hard to contemplate but do they have to stay? You will be taking a big risk having them indoors but with plenty of ventilation it might reduce the risk. But that's just not possible if they're staying overnight. I don't know how old they are but if they go to school or nursery those places are particularly good for spreading the virus.
I know i am taking a chance 13 yr old🤞
Oh yes you really are taking a very big risk considering you are on RTX and so very immune suppressed.My friend is a secondary teacher and says a huge number of their students and many staff are isolating. Lots of their students have Covid but are asymptomatic. They’ve not been wearing masks in the classrooms and ventilation .
Please do watch the FB live video and then review the risks you are thinking of taking.
Yes .. it’s the Daily Mail 😑 but from my own recent experience I know there is going to be much more said about Rtx, just as the professor intimated. Not long to go until the Octave results and it’s sooner then I thought re those. They’ve done so well.
Couldnt open link
If you are on Facebook find NRAS page and you may find a link from there
👍🏻
I 'm sorry but the Daily Mail!!!!!! I would no more trust that than Mystic Meg. This is not helpful. We have enough to worry about without listening to utter tripe.
Oh dear, I have my first infusion in a month’s time!
If you need it you need it. It has been very successful for me after getting no relief from four previous drugs. Just take care when you’re out and about. Good luck I hope it works well for you too.
Agree!
Just do what you can and try to keep safe. We have all tried so hard during this dreadful time but we cannot continue doing this shielding. I feel as though my life is slipping away and I need to be brave, wear my mask, use my sanitizer and try to rejoin the living once again. 🤔
Thats how I feel. Little by little 🤞
Best not take too much notice of the Daily Mail…most of us here on Rtx have been successfully vaccinated under the direction of our doctors/ Rheumatologists.I don’t think they would still be telling us to go ahead if they thought we would not benefit.
The only caveat is to ensure you time the vaccination correctly.
I’ve been on Rtx for my RA for around 6 years now & I also have Multiple Myeloma which is a blood cancer. Both my consultants (RA & Haematologist) have encouraged me to have the vaccine. Due to the diseases & their treatments I will not gain as much immunity as an otherwise ‘healthy’ person but both have said that a small amount of protection is far better than none. I’m under no illusions that I will ever gain as much protection from any vaccine (not just the Covid jabs) as most others so I’m still extra careful when out & about. I am still not mixing in close proximity with others & probably won’t start that until everyone that’s willing to have both vaccines has had them.
What utter rubbish! There are hundreds of thousands of patients on immunosuppressive drugs for auto immune disease such as RA, MS, Chrones etc as well as patients receiving chemotherapy for cancer it may run into millions. We have a flu jab every year and nobody said that didn't work. This would have been taken into consideration. It just sells papers by scaring people which is what has been going on all the time. Disgraceful! I prefer to listen to actual scientists not journalists pretending to be scientists.
👍🏻
True👍🏻
It would seem common sense to avoid having vaccine and rituximab at the same time merely to avoid putting the immune system under pressure having two treatments at the same time. But that does not mean vaccine will not work merely the chances of having a more severe reaction are increased. I had nearly a week feeling unwell and nasty headache for 48 hours but after that nothing and it was a good 9 months after my last treatment of rituximab. Again I was advised to stop methotrexate whilst taking antibiotics some years ago just a question of managing medication wisely. I haven't seen an article in the Daily Mail about that. The Daily Mail is known for quack medical articles. It once advised eating celery for high blood pressure I remember that my husband's aunt was almost persuaded by and we had to reason with her so she didn't stop her prescription medicine!
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