Evening everyone. How are you all? Hope you’re keeping safe and as well as you can be. I just wanted to share some news as I’ve just got results back for my antibody test (spike protein) and from what I’ve read in a few recent articles the results are surprising and I wanted to share and to hopefully bring some hope and potential positive news. From reading recent reports I assumed that being on the highest dose of MTX I would have produced a low level of antibodies but the result has just come back to say that I have greater than 2,500 U/mL which equates to a very high level of antibodies. Now I won’t pretend to understand what the reading means but the explanation certainly surprised me so perhaps we can make antibodies after all despite our lupus and our medications. Take care everyone 🤗.
Antibody Test results: Evening everyone. How are... - LUPUS UK
Antibody Test results
The problem is the experts don’t know the meaning. I thé US they are discouraging us from antibody testing and to go by the best data available.
My rheumatologist just explained to me that we will receive conflicting data.
Thank you for your results but we still need to follow the guidelines of experts.
It was actually my GP that told me to get this test done. I do agree limited explanation and if you want to speak to the testing company’s doctor it costs another £42 so basically a license to print money. I wasn’t suggesting to anyone that we all throw caution to the wind but the last few reports that have been released were quite negative and worrying so just thought it might be good to post something more positive. Apologies didn’t mean to mislead anyone and apologies if I’ve upset anyone.
The issue is whether to have these antibody tests at all. In the US doctors are told not to order it. Your case me be different but this is the consensus here.
Money has nothing to do with it. If it were as easy as testing everyone for antibodies, that would make things easier.
Everyone here on the forum should take the advise from the health authorities and their individual doctors.
It is not a question of upsetting anyone. You are one person. The current data has established that certain immunocompromised people should get a third vaccine. I suspect the U.K. will follow as we are usually in sync.
My rheumatologist just explained to me we will continue to get conflicted data. Just go with what the experts are saying as they continue to study the most vulnerable. It is tough because this a large group on various medications and with different issues.
I’ll be honest I wish I hadn’t posted anything here now. Everyone ignore my post as it’s too late to delete.
I know you thought you were being positive but, unfortunately, it seems pretty unclear what this means now. Too many immunocompromised patients are landing in the hospital.
Best thing is get third vaccine is advised.
I’ve asked for this post to be removed. I understand your point of view but I’d appreciate not being reprimanded especially when I apologised.
That would be a shame. Plenty of posts on here and the NRAS forum on the same subject allowing people to discuss/debate the issue.
I think that it is good to hear another perspective. You are right there is too much negativity around this subject. You weren't interpreting the results just sharing them, thanks for doing so.
No no! I find this very useful because my rheumatologist ordered it and never really explained except he doesn’t think it’d take because of rituximab. We’re all flailing about in the dark, any info is great and we all know nothing is black and white with us and covid or indeed anyone and COVID. Kay (if you follow her posts) is very matter of fact, I don’t think she meant too much by it. But I’m very interested. Xxxxxx
You were being so positive and I support that positivity 100%. I just joined this group and was a bit shocked to see such negative responses to the information you shared.. I thought I was joining a support group. ?? As lupus sufferers I think the very last thing we need is to be made to feel more crappy than we do already. Anyway don't lose your bright energy hun, and please please don't stop sharing your findings and experiences. You definitely got me feeling hopeful so big Thanks!
Na, it cheered me up. 🙌 High Ten!x
Hi KayHimm ,
Can I recommend that you do not try to apply practice in the US to everything that is posted here please? We welcome people from all around the world, but as this forum is hosted by LUPUS UK, the vast majority of members are living in the UK. There are some significant differences between healthcare in the US and the UK and on too many occasions I have seen comments like this cause confusion and upset.
You are quite right that understanding of COVID-19 immunity is not sufficient for antibody tests to be conclusive. However, Public Health England has issued guidance that measurement of antibody levels post-vaccination appears to generally indicate the likelihood of vaccine protection against infection. This does include a warning that unless T-cell responses are also measured, likely clinical protection against severe disease cannot be fully assessed.
Antibody testing may give someone an indication of their mitigated, but not eliminated, risk against COVID-19 disease. The presence of detectable circulating antibodies will almost certainly result in a mitigation of severe disease on re-exposure but cannot, at present, be used to assure protection from infection.
Antibody levels almost certainly reduce over time, so the risk assessment will capture a point in time and not reflect future levels of protection. T-cell derived response is equally important in response to COVID-19 but is far more challenging to assess. A wholly T-cell driven response to COVID-19 is rare, so antibody testing remains the most accessible marker of immune response.
Public Health England has provided guidance to assist primary healthcare workers in discussions with patients regarding antibody status and immune response.
Thank you Paul for your explanation that is really helpful. KayHimm has reached out to apologise which was appreciated. I appreciate everyone’s point of view just wanted to clarify that I didn’t mean to cause any problems on the site only wanted to say that whilst we’re all different it was interesting to see the kind of response I’d had and show that perhaps it wasn’t all doom and gloom as some of the recent media articles have been. Thanks again.
Understood. I was actually using the fact that the US is urging the public not to get antibody testing to underline the point you make about « inconclusive evidence. » It is a bigger problem here maybe because of easy access to the testing.
I stand corrected. If the UK is advising doctors to do the antibody testing, that is a difference. I am sorry to have confused and upset people. One simple article for patients on why not to have antibody testing had an author from the WHO on it, so I thought the recommendation was fairly general.
My concern when I saw the post about the antibody response was simply that forum members would think they should pay to have the test - some have - when things are unclear.
I actually think it is a shame that some members have found information about the US unhelpful. I love learning about the differences whether it be better adherence to guidelines in the UK, COVID policy and similar access problems in less populated areas.
Since my US perspective will inevitably interfere, I will no longer respond to most posts.
I love learning about life for US citizens Kay 🤗You're my Lupie friend in New York City!! 🌈😽😽Xx
No reprimand intended just important to recognize that each person is different and that we need to discuss with our doctors.
Always good to hear all sides. Your doctor had a reason to do your test.
Have you found a doctor who knows anything at all about it?
I am not sure what you are asking. There are many doctors who know quite a lot about the vaccine in immunocompromised patients. The problem is it is a large and varied group. So as they learn more about each individual group - radiation treatment for cancer patients or lupus patients on Rituximab, as examples - and then adjust guidelines.
Yesterday when I spoke to my rheumatologist he said we will continue to get conflicting data. So I had the third vaccine according to current US guidelines but these guidelines may not include me in six months.
There seem to be observational studies going on all over the world. I just read what appears to be an important study on kidney transplant patients. I didn’t understand much of it but could tell there are many variables. Those doctors seem to be getting a handle on what to measure in those patients to know whether a third vaccine is beneficial.
So yes, I think we are all fortunate that we not only have the vaccine but that the most vulnerable will likely be helped by the third vaccine.
A third vaccine has been discussed amongst my team so it is looking likely. I’m on rituximab.
Mercy -
I would think you will be advised to get it. Rituximab seems to come up frequently as a concern with patients with autoimmune disease.
I had the third shot - no side effects at all. Hope that isn’t a bad sign 😅. I did have flu-like symptoms one day with second shot.
Keep us posted.
Yeah I’m hearing ‘rituximab’ a lot with all this. I’m definitely taking whatever needed to keep safe. It’s the families I feel for having to mask up around me again after being double jabbed and thinking I was safe. Unfortunately we’re all in the same boat. You know what I find fascinating? The long covid symptoms, not to sound so simplistic but don’t the symptoms match some of ours? TX
I know they were concerned about that. I have post Covid inflammatory syndrome but respond to steroid inhaler. I remember the pulmonologist many months saying they were suspecting an autoimmune response in some people. She said if I hadn’t already had all the antibody tests, she would be testing me.
They may never figure this out. It is really awful for many people.
Xk
One day at a time as they say. 🙏 Tx
True .. long days for some, right? Hope you get your vaccine soon. The NY Times did a story on vaccinated people’s accounts of « mild » covid. It gives you pause. These people are urging the vaccinated to protect themselves because these mild cases don’t always feel mild to the patient.
I know I have to be more careful with this delta variant out there. xk
I have been saying the same since first hearing. All of the response sound like overactive immune system problems! I’ve had COVID multiple times and still trying to figure out long hauler symptoms for myself. They’re not so black and white when you already have Lupus and remain in a flare. Thank goodness no hospitalization but I don’t want to live in fear of COVID forever. I feel like a prisoner at times and family look at me like I’m extra crazy I think 😬
Rob, I was just going to say that to Kay ‘prisoner in own home’, but it’s my choice because I’m so scared. At least Professor D’Cruz says it will get them money for more research into long COVID that will benefit us also. A lot of the symptoms are scarily similar. Take care X
That is promising. I can’t wait for better days. I mean, it could always be worse, but I’m just tired. I’m young and wanna feel vibrant. Not weak. Yesterday my sig other said, you’re my fragile queen and I need to make sure I take care of you.” I felt horrible. 😭 He meant it in the best way, but it still hurt to know that this was how he viewed me.
Oh boy I know the feeling. I want to be able to have cocktails with friends etc. It’s not going to happen, this is my new normal. The parallels between myself and my best friend of 40 years veered massively when I got sick, whereas we were both on same tractory up until then, the BOOM, I got sick, medically retired, lost my house, she’s fit and healthy (thank God) a director of a major bank. I’m so proud of her and try so hard to not be envious but it’s like seeing what could have been. Very hard. But there’s always some poor soul worse off. TX
Yes MercyT! Yes! I feel your pain. It’s really difficult to cope with at times. I’m so glad I found this group. I’m afraid of being alone at this point. If I were my significant other, I’d be tired of some of this crap. I remain positive most days but of late, it’s been getting ahead of me. So glad he’s still rocking and rolling with me. It makes life that much better. I’ve been with a no supportive dog other and it is the pits. Physically and everything else “-ally” 🤣
And the trying not to be negative or a ‘drain’ incase you push everyone away. A lot more to it than our physical health isn’t there? I cannot stand being spoken down to because I’m struggling to adapt (still ha ha), so when a doctor starts, I get mouthy. I truly believe that docs/specialists etc need to have compulsory education in their first year at med school on how to deal with the chronically ill. I’ve some great specialists but recently had a stand up row with a ‘God complex’ type A that left me in a heap all weekend. Well I say stand up row, he stood, I couldn’t ha ha. Disgusting man he was. I know we’ve all been there. Terri X
Great news! A little positive is so good to hear. Thanks for sharing!!
Hey I think it’s great that you posted and I think I did too after my results - which were grotty minuscule compared to yours but hey ho. I’m sure that NHS testing everyone who is immune compromised would have provided an interesting extra dimension to research but in the real world there’s a desperate shortage of vials for blood samples here now so I’m very glad they didn’t. I too paid to get it done and no regrets.
My rheumatologist seemed rather amused and intrigued when I told her I’d done it and why -but didn’t note it down or ask for details - which I guess means she took it with a large pinch of salt.
However I have been back at work invigilating in a large well ventilated space where all who have passed through have worn masks and been respectful. Since I did the test my dose of MMF has gone up to 3g and I’ve had a large IM steroid shot so I’m feeling extra vulnerable now and have entirely put the test results from my mind.
I know I’m as CEV as it gets for someone who’s had both vaccines quite a while ago - but life goes on and I do have to keep reminding myself to wear my mask vigilantly and wash hands more often and sanitise etc and I think knowing that the Roche test came back showing a relatively poor response has helped me. After all a year and half of shielding and a lifetime of not wearing masks means that it’s easy enough to slip up/ forget this new reality we all face. I’m sure you’ll continue as previously but if you’re on MMF too then I think this is a great response, even if the significance is not clear at all given it’s only a snapshot looking at some immune cells but not others.
But interestingly it shows me how much variability there is to our wayward immune systems and perhaps how effectively immune suppressed I actually was even on 2g MMF.
Whatever - it’s interesting and I’m sure it helps Lupus U.K. to know we are getting these tests done privately and maybe able to collate the psychological and practical info anonymously who knows?
You absolutely shouldn’t feel reprimanded or feel the need to remove this post. In fact I hope they advise you not to! Xx
Good morning Froggie 🤗I'm so glad that you've been pleasantly surprised by your result n it's definitely worth sharing it here coz tbh I'm a bit down about it all. The third jab being considered for people like us etc..I was thinking well what's the point if we've got very little immunity anyway? I've felt like a pincushion this year what with regular blood tests and the jabs..so thank you coz you've spurred me on!! 🌈😽😽Xx
Absolutely! I have been so discouraged lately so I love good news.
Hi Froggie! I found your post really encouraging and positive stuff is just what I need right now. In Australia it has always been “best practice “ to ensure antibody levels are sufficient to prevent disease- in any health workers, and those who are immune compromised.
I am certainly following the NSW Health guidelines, and when I can actually find my rheumatologist I comply with everything he says.
I have been fully Pfizered, but was taking 15mg prednisone at the time, and still reducing ATM. So thank you for sharing your happy result. It perked me up!😘
I absolutely agree with the main consensus here, it's good to read some more positive news.
We're none of us stupid, reading your post is not going to send us all into the streets dancing, throwing caution to the wind. We know enough about these AI diseases to understand that we're all affected very differently by them. No doubt if we were all tested for antibodies, our results would all be very different.
Specialists do not yet have the answers, though many theories abound. I see some outstanding docs who shake their heads and admit they don't have the answers re immunity and our conditions and treatments.
It doesn't seem as if the UK scientists have agreed on the fine detail of the booster dose here yet other than the super vulnerable being offered it. As with the vaccination categories, it's cloudy as to who will fall into which grouping. Good for your GP, at least he's considering your vulnerability and is trying to support you.
You were right to post and I'm glad you did, and I really feel that you shouldn't remove your post or be made to feel badly. This forum is open to all sorts of news, the good, the bad and the ugly. Thanks for posting!
I think it is brill you posted as it is an area probably that more attention will be given to in the future. I had a reading of 260 AU / ml recently in August - test done by NHS rheumatology dept. so guessing result is of value to them. As in 'arbituary units' I believe it does not necessarily compare to results from other labs globally..not sure how this works..
I believe I had covid March 2020, I had my first jab in March 2021 - 5 months before the antibody test, having a strong but scary reaction - second jab been put on hold by GP, as does not want the same thing to happen again. I guess I may get a different jab next time.
It is good for citizens as well as doctors to understand the facts and have information to hand on which they can base decisions.
At the moment they are so stretched ..and in the UK don't even have vials to do all the blood tests. Is this the same in other countries or is it just the UK that has this issue?
I was so pleased to read your post and was, if briefly uplifted by your comments. So thank you...If only that was the case for us all, but the reality is it isn't. .jx 🙏
Honestly the medical professional world wide really do not have a clear cut belief of science proven answer to the vaccine effectiveness in all compromised populations. Antibodies are a third of the needed response T and B cells matter as well. Over all many studies are showing the vaccines, though not working as well in all immunocompromised patients do still work for many who are .
This article is a few weeks old and many studies were obviously run pre delta and the vaccines seem to wane antibody wise with time at least. Most breakthrough hospitalizations and deaths over all are seen in older populations still, who were first to receive jabs. My parents have a third jab this week I go next month . This is what the us cdc suggests for all compromised patients but the fda has not approved it for not everyone yet. Basically new studies are not yet complete but do show higher risk in organ transplant, high steroid patients and blood cancer people.
asm.org/Articles/2021/Augus...
As I mentioned to another member, my rheumatologist made it clear to me yesterday that we will continue to get conflicting data. Recommendations are going to change as they learn more.
I met guidelines for the third dose and still do according to the cancer experts guidelines. That could change.
The US guidelines specify people with autoimmune disease on immunosuppressants as needing the third dose.
Go to the guidelines. Those may be the highest risk but clearly the experts think solid tumor treatment and autoimmune patients on immunosuppressants are also at risk.
Even before the pandemic doctors were becoming aware of more serious weakening of the immune system in cancer patients than thought. Early breast cancer patients have weakened immune systems for nine months.
The best thing is to follow guidelines and consult our doctors. We do not have access to the information they have. We just get an occasion study that pops up on Google.
Fantastic news Froggie! That's my reaction anyway... Thanks for posting 👍🤞💪✊etc xx
Froggie -
Very sorry if I discouraged you or if you felt criticized. If your doctor ordered the test, he/she had a reason. So this is good news. I have a friend with severe RA whose doctor ordered the antibody test also. He just got his third vaccine so his doctor is probably less worried.
Let us know what your doctor recommends now that the UK is giving third shots to the immunocompromised.
The guidelines look similar to the US guidelines - not really a surprise because the two countries are usually similar in approach.
I had a high antibody response after Covid but was still supposed to get the third vaccine after chemo/radiation. That recommendation may change.
xk
Actually people that studies were done on are all transplant patients. They are a different category than us. There have been other studies showing that lupus patients do not have an increased risk just because of lupus. I take the highest dosage of mycophenolate and have enormous number of antibodies developed.
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