Don't get too relaxed about going out because you... - PMRGCAuk

PMRGCAuk

13,606 members24,778 posts

Don't get too relaxed about going out because you've had your vaccination! First results show steroids and MTX damp the immune response.

PMRpro profile image
PMRproAmbassador

Someone the forum say this and sent the link to me - thanks are due to her!

medrxiv.org/content/10.1101...

"Conclusions: CID patients treated with immunosuppressive therapies exhibit impaired SARS-CoV-2 vaccine-induced immunity, with glucocorticoids and B cell depletion therapy more severely impeding optimal responses."

This is new work and a preprint - it hasn't yet been peer-reviewed and they took the measurements just 1-2 weeks after the second jab so it is possible it will improve. However, if you are on steroids or methotrexate you cannot afford to be complacent and masks and distancing should remain the order of the day at present.

As the incidence of the virus in the population falls, it will become safer but you cannot assume that because you have had the jab you are safe. We've all got this far - let's not spoil it now.

CID = Chronic Inflammatory Disease (most rheumatic disorders are inflammatory in some way but the crucial point is the effect of corticosteroids on the development of the immune response to the vaccine). The study is mainly relevant to the mRNA vaccines - Pfizer-BioNTech and Moderna. It isn't yet known what happens with the AZ vaccine which hasn't been used in the USA.

111 Replies

I looked up CID. I assume it is not Criminal Investigation Department, but Combined Immunodeficiency Syndrome, as in the article, or perhaps Chronic Immune Disorder? Is PMR a chronic immune disorder?

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Chronic inflammatory diseases - it is defined in the full text of the abstract in the link I included in the post. And yes, PMR is definitely a chronic inflammatory disease. But actually - it is the corticosteroid bit that matters,

This is interesting but seems generalised. Eg does the level of dosage come into play? What was the age range involved? Is there a difference in our case between GCA and Polymyalgia? What medication were the 133 chosen taken? Is this impacting on all vaccines? It certainly wouldn’t put me off having the vaccination but I would definitely like to know more 😀

PMRpro profile image
PMRproAmbassador in reply to Thelmarina

Have you looked at the link? It is the MEDICATION that is the crucial point, not the disease.

Thelmarina profile image
Thelmarina in reply to PMRpro

Of course -I was elliptical- the medication is the issue but there are other factors that impact on the medication. And we are already confused about the difference high or low dosage may make from different sources. I think I’ll take the vaccination and huge care until more is known. I wasn’t planning on a party anyway 😀

HeronNS profile image
HeronNS in reply to Thelmarina

I, too, would like to have seen dosage and also duration of treatment mentioned. Maybe I skimmed the article too quickly. I was already slightly concerned, now feel really worried. It sounds like low dose is a problem, and I innocently believed it was not, but still worried because my current low dose is so much higher than it had been - but, again, does duration make a difference? So many questions and nothing I can do about any of it. No wonder ppl sometimes just bury their head in the sand.

_charcoal_ profile image
_charcoal_ in reply to HeronNS

This was my reaction to reading it too - exactly the same mixture of thoughts. The most worrying part was:

"We also found that glucocorticoid use resulted in a 10-fold reduction in antibody titers following SARS-CoV-2 vaccination. This was independent of dose, with very low titers observed in some subjects taking <5mg prednisone daily." (p. 19 of 41 on my device)

Sure, it's a preprint, not a large sample, etc,... but it's a side-effect you don't want to discover about a low, maintenance-dose of pred that some medics, eg Dasgupta, claim is safe to be on indefinitely. If further research bears out the findings, at least the issue will be addressed, as prednisone / prednisolone is such a widely-used medication.

HeronNS profile image
HeronNS in reply to _charcoal_

This is response to two specific vaccines. I wonder if our response to traditional either active or inactivated vaccinations has been studied? What about our immune response to "whatever is going around" the neighbourhood?

_charcoal_ profile image
_charcoal_ in reply to HeronNS

Yes, I wonder how they compare? And if there were to be a significant difference, why?

If our response to non-mRNA vaccines was not impaired, or much less so, an obvious immediate solution is to give us those. Unless this pre-print turns out to be misleading, though, there'll probably be a big push to get ppl off pred altogether.

HeronNS profile image
HeronNS in reply to _charcoal_

Really the lesson to be learned here is not to subject a sizeable minority of people to the risks of discontinuing medication, but to ensure that everyone who can be vaccinated is vaccinated and then the vulnerable are protected - the whole point of herd immunity. I'm getting a bit fed up hearing about the "vaccine hesitant" (not to be confused with the anti-vaxxers). Although latest word from Ontario is ppl who were hesitant are getting more keen now that the disease is raging through the province. Problem is the bad press for A-Z. In Nova Scotia we ran out of doses and have to wait for another shipment. In other parts of the country A-Z clinics are sometimes nearly empty although it's an opportunity for people between 55-64 to get their vaccine weeks earlier than they otherwise would.

_charcoal_ profile image
_charcoal_ in reply to HeronNS

Well, the vaccine-hesitant are the key to a good outcome here for pred-users and for everyone, but the nearly empty A-Z clinics are discouraging although not surprising.

It's A-Z now, but a while ago, when Pfizer said that they couldn't guarantee non-transmission of infection, that got turned into, "no point in having it, then" and even "the vaccinated are going to spread the virus, selfish old lot!"

PMRpro profile image
PMRproAmbassador in reply to _charcoal_

Except the evidence is mounting that the shedding of virus by the vaccinated is low enough to not spread the virus.

HeronNS profile image
HeronNS in reply to PMRpro

In our neighbouring province there's been an outbreak of UK variant covid. People who had been vaccinated fell ill with covid two weeks after vaccination. I don't know if it's been determined yet whether they must already have been infected but still asymptomatic at time of vaccination, or whether they were exposed afterwards. An object lesson for those who are inclined to waltz out of the clinic and feel they are instantly invulnerable, and also not a danger to others. This despite public health telling folk to keep on following all the rules.

HeronNS profile image
HeronNS in reply to _charcoal_

I would have put myself in the "vaccine hesitant" category a few months ago, just because the usual long term studies had not been made. I was relieved I would not be getting a vaccination until the products had been in use for a few months. All along I've been concerned about the fact of pred, but to have vague concerns confirmed and possibly the situation worse than anticipated mere days before I bare my arm is disheartening. I feel there's no need for people who have been paying attention to be vaccine hesitant any more, at least in Canada where an at risk group (younger women and A-Z) actually can be offered a different vaccine. But there's not much people like us can do if perhaps any covid vaccine we willingly accept is not really able to do its job completely.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

But you do have to remember that NO vaccine is 100%. Being 50% effective is accepted as good. And it will become clearer how much help is required to not develop serious illness if you are exposed and infected. The blood levels of the antibodies and t-cells don't necessarily correlate with their efficacy in preventing serious illness.

HeronNS profile image
HeronNS in reply to PMRpro

Interesting, though. When you got vaccinated against polio you never thought you might still be vulnerable. With the flu shot you knew you might not get much protection at all. I think the early conversations about these covid vaccines led us to believe it would be more like polio protection, not flu protection.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Two doses of polio vaccine are 90% effective, 3 are 99/100% effective. Something similar could be the case - in polio the vaccine only protcts against that serotype, meet another and you could still get polio. But the polio vaccine is sometimes a live vaccine - theoretically you can catch it from a baby's stools if they are given the oral version. The main reason anything is wiped out as we tend to think polio is (it isn't worldwide) is because the number of contacts with cases is so low as a result of vaccination.

HeronNS profile image
HeronNS in reply to PMRpro

It is actually quite concerning that polio is present in so many countries. I think this is backsliding because at one time I think they were saying they only saw it in three countries, now the list is long. Also I think it's in the environment, isn't it? Which is why children have to be vaccinated everywhere in the world, whereas not true of smallpox. We will never be free of the risk of polio.

_charcoal_ profile image
_charcoal_ in reply to HeronNS

There seems to be a spectrum of vaccine hesitancy, then, ranging from:

(1) those would like to know more about potential risks of vaccines and are genuinely interested in the truth, "paying attention", as you put it, and

(2) those who hear a scientist say, "there's a remote possibility of x", or, "we can't rule out x" (because data re x wasn't collected, or it would take further time to rule it out anyway) and out of sheer ignorance or out of an "attitude" - agin the government? one-upmanship over the "sheep"? - turn it into something untrue. Witness the Pfizer examples above!

If you download the PDF and look at the Table on p.38 . Small sample (17) on pred. Mean dose 6.5 mg/day (Range 1-20mg) Even if this study is just an indication of the immune response following the Pfizer jab it is useful and unsurprising.

PMRpro profile image
PMRproAmbassador in reply to agingfeminist

No, doesn't surprise me in the least - but I am a bit surprised that aspect hasn't been explained better,

Sorry, I didn't notice a pdf to be downloaded, just read what was in the page linked above. Thanks for info, which makes me feel even worse, actually. When they said low dose they meant low dose!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Almost all the Covid stuff is free-to-air and there is a link at the top right of most abstract pages ...

HeronNS profile image
HeronNS in reply to PMRpro

I just didn't think of looking further - assumed all the relevant available info was in that first page.

RoadTrip profile image
RoadTrip in reply to HeronNS

I did exactly the same!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I imagine duration of treatment has little to do with it - the presence of steroid at the time, at and immediately after the jab, will be the crux. It has been recommended by some that methotrexate be stopped temporarily and steroids be avoided if possible - which obviously isn't practical for us. That was disputed - remember, we have talked about it - but this does appear to be the confirmation that it would have been advisable for mRNA vaccines. There aren't yet figures for other vaccines - it takes time and AZ is behind, others are even further behind.

HeronNS profile image
HeronNS in reply to PMRpro

Well it is what it is. Better than nothing, I suppose. But my flare couldn't have been worse timed!

_charcoal_ profile image
_charcoal_ in reply to HeronNS

Tough about the flare. But if this pre-print is correct, being on a lower dose of pred mayn't have made any difference to you. (NB the pre-print is hardly the last word, to say the least - see elsewhere in thread)

I too feel disheartened. Don't want to temp Providence, but not had a flare since Christmas and down to 3mg. Second Pfizer shot due in two weeks and, since I have various duties to carry out after a bereavement, ie disposal of effects, etc, I was expecting to feel more protected than I now will.

Not a question of going out on the razzle after the vax, even if there were any razzle out there on which to go...

HeronNS profile image
HeronNS in reply to _charcoal_

Maybe, but one can't help but think a dose of 2 would have less of an adverse effect than one closer to the study's level of 6.5? ;)

_charcoal_ profile image
_charcoal_ in reply to HeronNS

Exactly, it's counter-intuitive, isn't it? If I still feel OK I will taper the day after the vaccine - I'm getting as low as I can while the PMR seems comparatively inactive, anyway.

HeronNS profile image
HeronNS in reply to _charcoal_

I've been tapering down from my recent high of 10 and have taken 5.5 the past couple of days. It's not perfect, but I can live with it, and there is always a good part of the day when I feel quite well. Should be at 5 when get the shot on Monday, but don't dare try to drop faster than doing already.

_charcoal_ profile image
_charcoal_ in reply to HeronNS

5mg won't be bad at all at vax time. 5 was what my Rheumatologist wanted me to aim for, but I felt so physically fatigued that I had to taper further. 3 feels far better physically, although I've been experiencing mental inertia. Adrenal system adjusting, perhaps, or just coincidence?

HeronNS profile image
HeronNS in reply to _charcoal_

Three is great. I was around 2 for years, so still not happy at 5. It is what it is, let the universe do what it will.....

_charcoal_ profile image
_charcoal_ in reply to HeronNS

Thanks - only had PMR since last May, so still grappling with the situation.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I suspect that it will depend on the patient and even on what underlying illness you have. And the person of course. It isn't a massive study - lots more numbers needed.

Hunter134 profile image
Hunter134 in reply to HeronNS

I am trying to taper from 10 MG's before I get my vaccine.Instinct told me if I can get lower it will be a better immune response.

HeronNS profile image
HeronNS in reply to Hunter134

Hopefully, although the paper PMRpro linked to indicates that even very low doses of pred interfere with an optimum immune response. I know how you feel, though. We do what we can. I got my first Pfizer shot today, next one is at end of July.

Hunter134 profile image
Hunter134 in reply to HeronNS

Keep me posted on how u feel after the second jab.Goid luck!!!

HeronNS profile image
HeronNS in reply to Hunter134

I certainly hope you have a chance to find out for yourself! Right now, 8 hours after first shot, I feel no difference in my two arms. Both are PMRish uncomfortable 😣. I have got my dose down to 5 from 10, but I really need a little bit more. Will try to hold out for at least a couple of weeks, and maybe it will improve anyway over that time. Certainly not anywhere nearly as bad as no pred at all 😅.

PMRpro profile image
PMRproAmbassador in reply to Hunter134

Possibly - but what if you can't get below 10mg without flaring? Evidence also shows that poorly controlled rheumatic disease is also a risk factor for severe Covid. No chance of me getting below 10mg in the foreseeable - I took the jabs and ran ...

Thanks for that....I read at the weekend where other tests are to be carried out the same as this....I think we probably all know we aren't as protected even after both vaccines......and all we can do is be careful.......perhaps for quite a long time....

I have just, in my googling this subject, discovered that the CDC does not believe there should be more than 6 weeks between vaccine doses. Canada now allows 16 weeks. This is in response to lack of supply, the idea being that a lot of partly immunized ppl would be better than half as many fully vaccinated. This has been a worry to me all along, knowing pred might make a difference, and now I'm even more concerned. They do say if the supply increases they may be able to narrow the gap but I can't see them being able to reduce it by much.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

The concept of the long gap is to have a large population that isn't likely to get extremely sick - the claim in the UK where they introduced the long gap first is that there is almost 100% protection from severe disease and IRO 80% protection from even moderate disease after only a single jab. That takes the strain off the healthcare system which is one of the biggest problems about a return to normal life - there simply isn't room in ICU for Covid patients and the usual everyday needs for ICU in serious illness or surgery of any sort.

But even after 2 doses of vaccine anyone can still catch Covid, that is normal, no vaccine is 100% successful and getting 60% protection is classed enough to get approval for some vaccines. Just people not on immunosuppressive medication will be far better protected - and the evidence thus far is that they are much less likely to pass on the virus even if they do become infected. And that will, in turn, provide us with protection.

However - there are other papers that show that poorly controlled inflammatory rheumatic disease is also a high risk for severe disease. I'm sure that there will be further work and they will identify the best vaccine for even us, possibly even develop a way of circumventing the problem. As I said, the paper did the tests 1-2 weeks after the second shot - and I would have said that was early, it may be it takes longer to build up a response. Time will tell.

Longtimer profile image
Longtimer in reply to HeronNS

OH had his second vaccine today 10 weeks after the first one, so within the 12 weeks we are told here in the U K.....now waiting for my second.....not much we can do about it which ever country we live in unfortunately...

HeronNS profile image
HeronNS in reply to Longtimer

Frankly at this point I'd be a lot happier with 12 weeks. We are beholden to the federal government for our vaccine supply, which is being distributed equitably, with allowance made for higher risk areas, like the Far North. This means although in the past several months we've never had more than 2 ppl in ICU with covid, and usually one or no one, we still have to behave as though we are overwhelmed like Ontario et co.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

And if you didn't ? Are they doing mass testing of non-symptomatic people? They have been picking up double the number of assymptomatic cases here with mass testing (and it isn't as much as ideal) as they are with symptomatic testing. The assymptomatic cases don't have a massive viral load - but they are obviously still passing it on.

HeronNS profile image
HeronNS in reply to PMRpro

Yes. I had to have a test last week because I'd been at a location of potential exposure. I don't know how many cases they are picking up but the daily tally is usually these days around 7 cases, travel related, close contact of existing case or "under investigation". They have pop-up asymptomatic testing clinics in what seem to me random locations but are probably where cases have turned up. Travellers seem to be getting much better at adhering to two week mandatory self-isolation. The major issue at the moment is the presence of both UK and South African variants in the province and our chief health officer has stated he is very worried about the next two months - but by the end of June nearly every adult in the province should have had one vaccination.

The reason we are not overwhelmed like Ontario etc is because we have adhered to much stricter protocol throughout. Ontario just declared a state of emergency (they've had over 3000 new cases daily for a while) but we've had a state of emergency since March 2020! I was referring to the fact that in a just world we could vaccinate everyone according to schedule, but because mass vaccination is so necessary everywhere else and we only get the same amount of vaccine as everyone else will therefore be vaccinating at the same rate. Initially in Nova Scotia, second doses were saved so a lot of the first line health care ppl and the aged in long term facilitles actually are fully vaccinated. But that was then, this is now and I don't think I will get to see my Ontario family for a very long time.

HeronNS profile image
HeronNS in reply to PMRpro

This might interest you:

thetyee.ca/News/2021/04/02/...

PMRpro profile image
PMRproAmbassador in reply to HeronNS

And this might interest you

medscape.com/viewarticle/94...

Thelmarina profile image
Thelmarina in reply to PMRpro

The article really brings home how complicated this virus is and how grateful we have to be to the people puzzling out the conundrums it raises. We have a long long way to go.

PMRpro profile image
PMRproAmbassador in reply to Thelmarina

We do - no quick fixes. But what are the media in the UK banging on about? Summer holidays! As a resident in a tourist region I know how locals are suffering - but the lack of tourists does make me feel a lot safer.

Thanks for highlighting the often hysterical, infantile UK media. I am not sure where everyone thinks they are going on holiday this year Israel? I await any results along these research lines regarding the pantomime villain Astra Zeneca vaccine the first dose of which received seven weeks ago. I am on 12.5mg of Prednisolone daily and Methotrexate 20mg weekly but feel blessed I also take Tocilizumab weekly injections. It's all very ironic, the immunosuppressants could help put me in hospital but one could save my life. I was hearing of research in the UK of a pure anti body injection designed specifically for immune challenged individuals that would give almost immediate cover and last around 12 months. Apparently the UK government was funding this but I have not heard anything about it for a while and would guess it is as vulnerable to the complexity of which variant it protects against. I have the uneasy feeling that the whole world is facing a huge whack a mole game for a number of years unless humanity stops virtue signalling and takes aggressive universal action before the next one arrives, if the behaviour doesn't change neither do the consequences.

PMRpro profile image
PMRproAmbassador in reply to AncientMariner

There is also talk of an antiviral that seems to work well. We'll see. But yes - without a lot of modification of behaviour it is only a matter of time until the next pandemic. Scientists have been warning about this one for the least 10+ years - there was no excuse for running down the insurance policies of protection.

I'm in the US. Have my 2nd Pfizer this morning. Here it is given 4 weeks apart. Cautiously optimistic but did experience fatigue, headache and nausea with a flair of PMR which required raising Prednisone from 4mg to ultimately 10mg. Rheumatologist said this was likely to happen. Good luck to all.

Hunter134 profile image
Hunter134 in reply to HeronNS

Canada didn't handle the pandemic very well.I am thinking the 4 months would make a big difference in how much immunity anyone gets.Sad really

HeronNS profile image
HeronNS in reply to Hunter134

I am very glad I live where I do, but we all remain on guard and nervous.

Hunter134 profile image
Hunter134 in reply to HeronNS

I live in Ontario so it's been a nightmare.

HeronNS profile image
HeronNS in reply to Hunter134

My daughter is a dietitian with Public Health. She was on mat leave until February and has since then been working - doing contact tracing. She is horrified at what is happening now. Hastings-Prince Edward district.

Thanks for this. I will be getting my 2nd in a few days but have no desire or interest to be changing my present way of life. Nothing will be changing in this household for the immediate or medium term.

PMRpro profile image
PMRproAmbassador in reply to Bcol

Same here - it isn't that awful really ...

Thank you for this. I can't say I'm surprised and will stay positive while staying safe. Even a little bit of 'normalcy' will be better than the past year. 🙂

Thanks

Thanks, interesting but not unexpected! However I had the AZ vaccine which is different from Pfizer or Moderna so this study does not apply. We’ve been shielding for 14 months & plan to continue until they have more knowledge and results. May take in a outside plant nursery or two but otherwise continue to have everything delivered and stay well away from other people...even outside! We’ve lived without takeaways, haircuts and pub meals for 18 months actually so I guess a bit longer will be fine (we have been shielding each winter for past four years before covid!) They will know more after further studies, I’m sure. Great to see the first study of this type coming through, it’s great to have knowledge of this type, even if it’s not hugely optimistic! S x

piglette profile image
piglette in reply to Pixix

Where do you live not to have had haircuts or takeaways since 2019?

Pixix profile image
Pixix in reply to piglette

We are shielded each winter due to my lung infection issues, nothing to do with covid! Except until covid nobody used the term. So we shielded from end October 2019 to February, as we’ve done the past three or four winters...then along came covid and we were shielded earlier than most, on February 1...so that’s shielding from end Oct 2019 until present day! Friends & family all understand the winter norm and we have a family meal end October in lieu of Christmas, and swap presents, then it’s no pubs, no restaurants, no parties, Christmas get togethers etc etc. But when you’ve been sick for three months each winter for three years you are ready to give up a lot in order not to be sick every Christmas and New Year! Good news is people won’t stare at me in a mask any more! Was a bit miffed when we’d already done months of lockdown, then ‘official lockdown’ came along just as we were due out! Our hairdressing skills are still no good though so hoping to have a cut before our winter lockdown comes round again!!

piglette profile image
piglette in reply to Pixix

I think people have the hairdresser as their number one wanted venue, I do. We went into lockdown in December the day before my appointment.

Mack100 profile image
Mack100 in reply to piglette

I married one although I must admit that a pandemic wasn't high on my list for doing so at the time

😀

Thelmarina profile image
Thelmarina in reply to Mack100

😅

Pixix profile image
Pixix in reply to piglette

Ours is mobile and a good friend. She will cut in our garden quite happily, but I told her to do all the people who work and see customers and people first! I know if I still worked I’d be more desperate to look better! She said she was very grateful as her list is never ending, and it gives her a tiny breathing space if everybody isn’t so desperate! S x

MrsNails profile image
MrsNails in reply to piglette

Eyebrows for Me! But not until 4weeks after my 2nd Vaccine, then with double masks 😷 😷

piglette profile image
piglette in reply to MrsNails

I do mine myself with no mask!! I colour them when I go to the hairdresser though.

MrsNails profile image
MrsNails in reply to piglette

Can’t see to do them unfortunately......

piglette profile image
piglette in reply to MrsNails

I colour mine in the hairdresser by sticking my finger in my hair and then rubbing it over my eyebrows!

Really would be nice if the study included or reported the immunosuppressive drugs being taken by the recipients, the dosages, whether taking more than one of these immunosuppressive where taken collectively and overall design and if I read it right (scanned it the first time) the data population is very small especially for what could be a large multivariate analyses with the more the variables the larger the population needs to be and extreme care needs to be used in its design. As written “I” find the disclosure meaningless.

Regardless, I’m following the USA CDC guidelines unless I feel they’re too lax and then I take additional appropriate precautions.

PMRpro profile image
PMRproAmbassador in reply to Boss302Fan

It takes time to gather this sort of info, especially for a specific cohort which doesn't have a massive population anyway. I DID say it is a preliminary study - but it is a pretty good pointer to go along with the changes in immune response between under 80s and over 80s that those of us who are CEV are not as well protected as we might like to think and that avoidance behaviour is still required.

May I ask a couple of statistical questions for clarification please? I read the article posted saying that even people on low doses of prednisone ie less than 5 mgs daily could have a 10 times reduction in their vaccination efficacy. ( or similar words. It’s late !) So erm if the vaccine efficacy is normally say 90% what is it reduced by? 10% to 80% ? Or nearer 10% efficacy ? And this whole efficacy business - I believe I understand that if after the first dose the vaccine efficacy is 50%, it means that half the people in the trial still caught Covid after being vaccinated. But do they not still have some protection ? So you could be in the 50% that still contracts the disease but don’t end up in hospital ? I can’t seem to find a google that explains this to me in plain English so relying on you clever people to inform me.

PMRpro profile image
PMRproAmbassador in reply to Seekingasolution

I understood it to mean that it is a tenth of maximum response, though how that relates to getting/not getting Covid relates isn't clear yet. The presence of antibodies/cells doesn't necessarily correlate with being ill/not being ill I don't think. They need more numbers for that.Yes - at 50% you have half the chance of being ill in the first place but you could be a lot less sick, however, there aren't figures for that yet.

Ipadmom profile image
Ipadmom in reply to PMRpro

It might be of interest that the consent form for me asked if I was immune compromised (USA). Unsure if other countries do likewise. Possibly to use for further research. (?)

PMRpro profile image
PMRproAmbassador in reply to Ipadmom

Mine required listing of all existing conditions - and at the second jab the doctor put numbers at the top of page 1 for each relevant condition, I also had to list medications - and was questioned about the pred at the first appointment (how long I'd been taking it).

Ipadmom profile image
Ipadmom in reply to PMRpro

Much more thorough than mine.

PMRpro profile image
PMRproAmbassador in reply to Ipadmom

Don't know if it was based on an Italy-wide form, could have been a local health service initiative, very Germanic here ...

Longtimer profile image
Longtimer in reply to Ipadmom

No, wasn`t asked that, only asked if I was on a blood thinning treatment....UK

I think it might be optimistic if people think the vaccine makes them completely safe. I always took it to mean I may not get as sick if I did get it, never that I was bomb proof. I guess this is all about time, for the virus to get weaker, and for us to be able to deal with it better. I'm happy just doing the little I do. Walking the dog and food shopping. Have no desire to do anything else right now.

The only thing I want to do is see my daughter and grandchildren in Hong Kong and I can't see that happening, perhaps even not this year.

I'm interested to see what they say about my second AstraZeneca when I do get it, when I have a history of dvt. I'm happy to have it, but usually as soon as they find out about that, I'm refused so many drugs and treatments.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Here they have changed the age guidance - but anyone who has had the first AZ gets a second because the clots all appeared after a first and not second jab.

Sophiestree profile image
Sophiestree in reply to PMRpro

Perfect... I'm happy to have it as I say, but that's good to know. Thank you

DDKRM profile image
DDKRM in reply to Sophiestree

I took part in a Biobank statistical survey for COVID-19 antibodies. This was about two months after my first jab. I was concerned that the result showed no antibodies. I questioned this and was told I would still have antibodies but not enough to show on the test. Hmm! I’m over 80 and have reduced my pred dose after five years to 3pd. I’ve now had my second jab. I’m not shielding any more but continuing to be very careful.

DDKRM profile image
DDKRM in reply to DDKRM

Ps. The vaccine I had was the Pfizer one.

Sophiestree profile image
Sophiestree in reply to DDKRM

Gosh, not exactly comforting then. But maybe that's how it is if you are on our kinds of drugs. I have no idea. Hopefully the second one gave you a bit more.

HeronNS profile image
HeronNS in reply to DDKRM

Interesting. Because I'm in a big study here (I think they are studying lifestyle, medical conditions etc to find out what might cause cancer in our population, it's one of those long term things) I've been asked to participate in an antibody test. So six months apart, which will cover the time in which I will receive two covid shots, I will be tested for the presence of antibodies. I wasn't going to do it (the thought of pricking my finger 😱) but then thought, here's a chance to find out. Unfortunately, after going through their lengthy permission form I don't think I as an individual will get my own results. But it will contribute to the general pool of information so will probably go through with it.

Nerak12 profile image
Nerak12 in reply to PMRpro

Going for my 2nd AZ jab tomorrow 😀

Good morning PMRpro 👋🏻. How’s lovely Italy today? Hope you & hubby are ok. I just caught up with your post and thought people might be interested in the views of Prof Tim Spectre of the Zoe Covid19 Symptom Study fame. Anyone using the App to report their symptoms was invited to a webinar a couple of weeks ago about the vaccine and it’s effectiveness on people with autoimmune disorders. It was very good! Tim’s views plus a prof of immunology and one of the lead investigators for AZ trial was that just because you don’t make lots of antibodies, doesn’t mean the vaccine will be ineffective. The group’s consensus view was that the vaccine is effective in reducing C19 symptoms in people on immunosuppressant therapy. I’ll try to copy the link in a separate post, but if people haven’t already done so, I would recommend getting the app and reporting daily as the Zoe group who are from Kings College are doing great work in monitoring disease prevalence and lots of other factors to do with Covid. Information on the App is aimed at both professionals and lay people and is open to international populations, not just uk.

PMRpro profile image
PMRproAmbassador in reply to Nerak12

This one?

covid.joinzoe.com/webinar/c...

Nerak12 profile image
Nerak12 in reply to PMRpro

Yep. That’s the one 😀

PMRpro profile image
PMRproAmbassador in reply to Nerak12

Just watched it - somehow I can't watch them effectively when they are new, they keep freezing and it is really frustrating!But basically it all comes down to "we haven't got figures yet, study starting Monday in the UK" - so they'll be a couple of weeks in recruiting now ...

Nerak12 profile image
Nerak12 in reply to PMRpro

Oh that’s very frustrating when viewing keeps getting interrupted. My OH and I have taken part in a number of their studies. They turn the data round quite quickly, so they’ve already published quite a bit of good scientific info, which they share on the app. They’ve done some good work on diet and the gut biome and it’s role in helping the immune system. Got my second jab tomorrow, so I’m a happy bunny! Xx

PMRpro profile image
PMRproAmbassador in reply to Nerak12

Was just happily watching a live BBC programme, nearly at the end, and the News broke. Will never know the happy (or otherwise) endings ...

Longtimer profile image
Longtimer in reply to PMRpro

I suppose also in weighing up our protection we have to also take in account how effective our own immune system is as well, and as individuals that won`t be an exact science if there is such a thing!....just my silly imput....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Exactly - Tim Spector basically said that in the last ZOE video. And we don't come with a dial to show how full it is ...

Nerak12 profile image
Nerak12 in reply to Longtimer

Not silly x

Nerak12 profile image
Nerak12 in reply to PMRpro

Damm! Not your day with broadcasts is it?! I’ve had to turn the radio off - too much already!! I rather liked HRH DoE, we shared a similar view of fools . Gets me into as much trouble as it did him 🤦🏻‍♀️ However, only so much eulogising I can take. X

PMRpro profile image
PMRproAmbassador in reply to Nerak12

Ditto re getting into trouble!!!

Whippetygirl profile image
Whippetygirl in reply to Nerak12

I have been participating in this forum for a few months now very worthwhile.

Also, In my mind, an added factor would be how often is someone exposed to illnesses and how much their body has developed immunity to a variety of those illnesses. Sort of like priming the pump possibly? I found as a teacher teaching in two different schools teaching 500 to 600 different elementary students every single week made for a lot of exposure to colds, flu, etc. The first few years I got sick constantly, after year 20 I rarely got a cold or flu so that might also make a difference. I hope they do a much more extensive study. Oh, as an aside, a teacher friend of mine who got both shots of Pfizer (3 weeks apart) who was exposed to Covid 6 weeks later did catch Covid and had a rough though manageable illness. Said it hit them hard like a bad cold or flu, but they got better after a week (were quaranteened 14 days). So that was a warning call to me to stick with masking and the protocols!

PMRpro profile image
PMRproAmbassador in reply to artfingers

the-scientist.com/news-opin...

Knew I'd seen something to the effect

😭😭

Found it! Most of the article speaks to the risk of getting the Sars-Cov-2 vaccines (Pfizer, Moderna, Astra-Zenica) and causing a flare. But, near the end of the article it addresses the 3 medicines will or could reduce the efficiency. The first is the one given by infusion (R....?), MTX - get off it for a few weeks before and after and lastly Pred., and based on past similar criteria usually doses less than 7.5mg/d the negative impact is minor.

Regardless I’m playing it safe and will wait for the Phase 4 study results.

I don’t like preliminary studies. The datasets typically are too small to draw any conclusions and with a too small datasets putting any emphasis on the statistical probabilities is not justified. In other words I consider such conclusions as garbage in / garbage out.

So maybe this link will help offset the negativity and concern the preliminary study caused. I currently lean more on this article as it appears more experience oriented. Something like this site. If went by some findings everything learned from folks who lived would be discounted. Maybe due to poor study designs or inadequate datasets.🤷🏼‍♂️

elemental.medium.com/should...

PMRpro profile image
PMRproAmbassador in reply to Boss302Fan

Rituximab.I don't fully discount the results of prelinimary studies or pilot studies - often they point which direction to go in. I take them as worst case scenarios and in this case it is to warn that having had the vaccine is only one step on the journey for us even if it means a big jump for others. I shall continue to assume I need to live as I have done for the last year for rather longer yet - it has kept me safe thus far.

Boss302Fan profile image
Boss302Fan in reply to PMRpro

We’re basically on the same page. I follow the more conservative guidelines until I’m comfortable with the latest findings. Ages ago I was reading scientific papers seems like all the time as part of our ongoing quest to understand the mechanisms involved in immunosuppression caused my certain viruses or tumors (worked in a Cancer Research Lab).

If I had a dollar for every time the Researcher I worked for went on a tirade about a paper that was worthless I’d be rich. His pet peeve was publishing too soon. Either do it right or not at all. After taking additional graduate level statistic courses I got a better understanding of his point and adopted it. Now just a retired lay-person who won’t change his spots and has zero tolerance for stupidity in this world. Don’t have an issue with ignorance, we’ve all got that and it can be decreased if willing to make the effort.😁

PMRpro profile image
PMRproAmbassador in reply to Boss302Fan

The trouble is that certain countries have a publish or die policy when it comes to grants so stuff is being published that isn't ready. And don't get me started on the reinvention of the wheel stuff ... Or mathematical modelling!We sat through a modelling presentation at a fairly specialist though broad-based meeting a few years ago with dropped jaws. It got to the questions and there was silence until someone stood up and asked "Have you actually read the paper by x and y from 1990-whatever?" It had been the actual experimental stuff that she wanted to model! If it isn't available on the internet to read it doesn't exist - she was a member of a society, the paper was pretty seminal stuff and published in the Proceedings and she didn't know ...

There is a new study in UK on immune response in people who are immuno-suppressed looking for volunteers: email OCTAVE@trials.bham.ac.uk to find out if you are eligible.

PMRpro profile image
PMRproAmbassador in reply to Sitasaba

You should post this information as a new thread - it will be lost here.

I would if I could - but a bit far away ;)

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