RA and COVID antibodies: Hey guys, looking for some... - NRAS

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RA and COVID antibodies

Abs_1992 profile image
34 Replies

Hey guys, looking for some advice. My mum has RA and is on Methotrexate, she has been reading up on on people with RA not developing antibodies from the vaccines. I was wondering if anybody has been able to get an antibody blood test from their GP as ours are saying they don’t do it. Also has anyone been contacted about a 3rd vaccine or booster dose?

Thanks in advance.

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Abs_1992 profile image
Abs_1992
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34 Replies

I’m getting mine done . I booked it through the government website when I booked a Covid test for hospital.

Lolabridge profile image
Lolabridge

I’m getting a spike protein antibody test on Friday at my GP surgery. This should show whether I have any antibodies from vaccination. It’s unlikely that I have any at all as I’m on Rituximab for my RA. I think that as your mum is on Methotrexate she probably does have some but may not have as many as if she was not taking the MTX. MTX and biologics deplete the antibodies to varying degrees.

I had a text from the NHS last week about a booster vaccination but it’s the third primary dose I need first and my GP is on the case.

Empress30 profile image
Empress30 in reply to Lolabridge

I take MTX and orencia. My spike test came back positive for anti bodies.

Neonkittie17 profile image
Neonkittie17

No, the GPs don't usually do the Roche spike protein antibodies tests. Try Lloyd’s or Testing For All online for your Mum but I’d think she may not like doing it herself as it is a bit messy to collect. Would her rheumatologist be able to request the test if you feel it’s needed and Mtx has affected her vaccine efficacy? I did my own Roche antibodies test in May though so it may have changed at the GP now.

Lolabridge profile image
Lolabridge in reply to Neonkittie17

My GP is organising mine for me as I discussed it with her last night. She said she had already done one for someone else.

helixhelix profile image
helixhelix in reply to Lolabridge

Maybe because you are on Rituximab so higher risk?

Lolabridge profile image
Lolabridge in reply to helixhelix

Yes I think so.

Neonkittie17 profile image
Neonkittie17 in reply to Lolabridge

Definitely due to Rtx. My immunologist has written to my rheumy and GP to say as soon as my B cells are back he wants me to have my vaccines repeated, but he’s also sending me some blood test forms for more in depth ig tests re Rtx side effects and he wants me to have an antibodies test in with those others. Also after when I eventually repeat my vaccines. So, yes if your GP recognises your med as one which is problematic re vaccine efficacy etc then yes they’ll do you the test. (If it’s just general patients wondering and worrying then I don’t think so.) Hope you find you have some antibodies. 🙏🏻 I paid for my test back in May from Testing for All as no one at the GP practices were really in the know back then re antibodies testing.

Lolabridge profile image
Lolabridge in reply to Neonkittie17

Yes Nk but I had my last infusion in May as my Rheumatologist would not consider letting me switch from RTX as you have done. So pointless for me to do the antibodies test until about now.

Neonkittie17 profile image
Neonkittie17 in reply to Lolabridge

Hi, I haven’t switched as yet as I am unable to switch to anything for now as Rtx will be in me for quite some time. I was told I’m not allowed to repeat it due to low igG side effects. The only way to do so for me would be to have either IV or sub-cut igG alongside Rtx. That’s another issue in itself and more complicated, and even if low igG improved, the issues of long B cell depletion, if would always be an issue to me for the vaccines due to the way I slowly repopulate B cells, so moving from Rtx is for both reasons.

Sorry, I wasn’t referring to you to have an antibodies test in May, I meant myself as it was six week after my second Pfizer and the best time to do it I was told. I don’t know when you had your vaccines. Good luck with the test.

GinnyE profile image
GinnyE

I have paid for and done my own antibody tests, none of my medics wanted to know and none will give me a third vaccine . I'm on 20 mg methotrexate and I had 1077 dropping to 440 after 3 months antibodies.I've posted alot about this on here. It's very hit and miss, maybe your area will be better than mine.

Neonkittie17 profile image
Neonkittie17 in reply to GinnyE

😢💗 I know you did and that’s unfair what is happening to you. I paid for my Roche test in May. x

GinnyE profile image
GinnyE in reply to Neonkittie17

Thanks. It's all a bit of a mess for some 😕

Neonkittie17 profile image
Neonkittie17 in reply to GinnyE

It is 😑

Sheila_G profile image
Sheila_G in reply to GinnyE

You should be offered a 3rd surely.

Pands profile image
Pands in reply to GinnyE

Hi Ginny I had mine done as well at 6 weeks post second Pfizer vaccination and it was 619. Don’t know what it was at 3 months but at 4.5 months (early August) I then caught covid anyway. So out of interest I had another antibody test done last week and it was 2500. Really interesting to see this - so having covid was like an (unwelcome) third vaccination in terms of generating antibodies.

GinnyE profile image
GinnyE in reply to Pands

Interesting. Glad you’re ok now.

Tile profile image
Tile in reply to Pands

Here are results from a 3rd dose for people on hemodialysis who were never infected: 1502 to 21, 569 AU/mL that's a wide range. So the median was 5156 AU/mL.

Sheila_G profile image
Sheila_G

I keep thinking I will have one done through the chemist but not sure as I would rather live in hope that I have some immunity than be told I have none. I just behave as though I have none and keep away from everyone just in case. Maybe we should all have one (not on nhs, that won't happen) so that all the people who have no antibodies or very few xould get a 3rd dose followed by a booster, regardless of what meds they are on.

Neonkittie17 profile image
Neonkittie17 in reply to Sheila_G

I always thought everyone on the meds thought/known to blunt the vaccine efficacy should have the antibodies test after the vaccine. Personally, I wanted to know for sure re antibodies as I’ve said before because of my med and side effects of it.

Sheila_G profile image
Sheila_G in reply to Neonkittie17

Yes of course and I am erring more on the side of getting one. When I come back from holiday maybe.

Neonkittie17 profile image
Neonkittie17 in reply to Sheila_G

Enjoy your hols. 💗

Sheila_G profile image
Sheila_G in reply to Neonkittie17

Thank you x

Otto11 profile image
Otto11

I don’t want to worry anyone but I was in a study group from a London hospital who actually e mailed me to inform me bloods as part of study had shown zero antibodies. I spoke to my GP about this & he just said it’s more complicated than that & you will have antibodies. So I bought a test myself but I caught Covid a few days later before I could do the test. X

Jayyyydddeee profile image
Jayyyydddeee

Hello, I recently had an antibody test and I had antibodies in my blood that was from the vaccine or previous infection to it but I regularly test through work and I am 99% sure I have not had it before as I had it recently and felt dreadful. I am also on mexothextrate. I guess everyone is different though and maybe it's an individual thing where some people are retaining it some may not? X

HappykindaGal profile image
HappykindaGal

NHS won't offer the Spike Protein test. I had mine done with a private GP as he drew the blood the usual way. Didn't fancy messing around pricking my finger and squeezing it out etc.. :)

Petal61 profile image
Petal61

Hi I’m on methotrexate. Have been part of a national study doing monthly blood tests for covid antibodies since May and all results have continued to show presence of antibodies relating to vaccine

StormySeas profile image
StormySeas

I had my third vaccine yesterday. GP said they don’t do antibody tests. Rheumatology dept at hospital said they don’t them either as there is not enough evidence to support the practice.

Whatever that means….

Neonkittie17 profile image
Neonkittie17 in reply to StormySeas

Antibody spike protein tests to the vaccine haven’t yet been evaluated to asses the level of protection is mostly likely what they will mean as we don’t know what is the threshold for protection. I just wanted to confirm as suspected that my med had blunted the efficacy of the vaccines. It was a case of needing to know if the vaccines needed to be repeated. Until the medics and scientists can work out what is the threshold for protection .. whether 50 or 500 or 5000 .. there will be uncertainty as to what is a good result. x

StormySeas profile image
StormySeas

I’m envious of the rigour with which your team make decisions. My 3rd jab was raced through in a couple of days and I’m beginning to wish I hadn’t had it. A) I feel terrible, and B) the science is so new I’m concerned they haven’t yet had time to evaluate, esp in relation to RTX.

Neonkittie17 profile image
Neonkittie17 in reply to StormySeas

Hi Stormy, I’m not sure if your reply was to me or to Lola. My rheumy hasn’t instigated all that needs to be done tbh .. it’s me pressing for all of this! She has acknowledged there is a real problem re repeating vaccines for those on Rtx without proof of B cells being repopulated and also my need to test for B cells more regularly at the moment. She did arrange my request to consult an immunologist who is sending me the blood forms so she’s very much with me but I’m driving this. Did you speak to the rheumy re when to have the 3rd vaccine you've just has? Apologies, if you’ve said this and I’ve forgotten.

StormySeas profile image
StormySeas in reply to Neonkittie17

Hi thereSorry I was replying to you!

I only spoke to my RH nurse who then consulted the rheumatologist. They’d clearly just received the new guidance, and acted immediately on that. I’d just been given a RTX date and queried whether it would be better to postpone until after 3rd vaccine. It was your posts that made me ask the question, so thanks for that. The speed with which the jab was organized was extraordinarily efficient. Nothing has ever happened that fast before! Well done for being so proactive and getting an immunologist appt X

Neonkittie17 profile image
Neonkittie17 in reply to StormySeas

Oh good I thought you were! 😄 I’m glad you managed to sort yours out and your infusion timing too. Efficient rheumy teams are good (and often rare!) As you know I’ve to wait for my B cells to reappear and it seem they have gone on long haul vacation! 🤨 I was asking my rheumy nurse in April at my last infusion re immunology and she said you need an immunologist as I can’t answer your questions fully and the rheumy will only be able to do so, so far. Then I asked my rheumy end of July and she referred me to the larger city hospital as my small hospital doesn’t have their own immunologists. The guy was excellent and I’m awaiting the blood forms for more in depth tests. Can’t do them at the moment anyhow till end of next week as I’m still on abx following a small op. I was determined to speak to an immunologist and he said I should have been doing so sooner but understood why not due to lack of rheumy contact during the last year. xx

Ascidian profile image
Ascidian

Hi Abs_1992, Just to let you know that your Mum won't officially qualify for a 3rd primary dose unless she was on MORE than 20mg mtx per week at the time of her first or second dose, or was taking certain other meds as well as the mtx. But she shouldn't worry too much. I am on 20mg mtx and decided to take an antibody (S) test. Mine showed I did have antibodies (211, whatever the units were). So not particularly high but definitely there, and this was 16 weeks after my 2nd jab, so I would expect the number to have been significantly higher earlier, as they drop off with time.

The reason the gps won't do the tests for most people is that nobody really knows what the antibody levels mean. Also, I read that there are 2 different types of immune response that are triggered by the vaccines. Although mtx reduces one type of immune response (the antibody level), it doesn't appear to affect the other type (T-cells). So, even if she has a low antibody level, she may still be very able to fight any Covid infection that she catches. I hope this reassures you and your mum.

As for information about boosters and/or 3rd jabs, my GP surgery has put a note on their website just 2 days ago to say that they will contact people as and when they are eligible. So perhaps just sit tight for a little while longer...

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