Not what we wanted to hear but...: Unsurprisingly... - PMRGCAuk

PMRGCAuk

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Not what we wanted to hear but...

agingfeminist profile image
57 Replies

Unsurprisingly, the research is beginning to show that immunosuppressed patients are not gaining immunity post vaccination. Follow this link. I don't know how ot make it live. Just copy paste into your browser.

medpagetoday.com/infectious...

I have had two Pfizer jabs and have not assumed they have given me any immunity, so I still live totally shielded (as I have for the past 15 months)

Better to know than to wonder...

I am so grateful to be functioning and pain free. Every day feels like a gift.

Sending virtual hugs to all the wonderful people who run this site and contribute.

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agingfeminist profile image
agingfeminist
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57 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Link works fine for me.

It is disappointing that vaccine doesn’t work as well as expected for some, but once all adults are vaccinated the chances of getting will decrease...so there is still hope.

agingfeminist profile image
agingfeminist in reply to DorsetLady

I am hopeful that the current trial of Pfizer vaccination in children will result in a regime for vaccinating children. That will also make a significant difference. To be honest I am wary of all sorts of other illnesses that are around...chicken pox for example, and ordinary common or garden flu when it re-emerges.

jinasc profile image
jinasc

I followed the link and then clicked on to the link to the actual study. I have copied this further link as this study relates to

"National Vaccine Research Study for Transplant Recipients"

transplantvaccine.org/

I don't know if anyone who uses this thread has had a Transplant or I possibly could have read it incorrectly.

Below you will find information about this National Vaccine Research Study for Transplant Recipients

agingfeminist profile image
agingfeminist in reply to jinasc

I think it is relevant to those immunosuppressed due to long-term, high dose on corticosteroids.

jinasc profile image
jinasc in reply to agingfeminist

Did you read thus bit 'Below you will find information about this National Vaccine Research Study for Transplant Recipients'.

agingfeminist profile image
agingfeminist in reply to jinasc

BETTER NEWS!I contacted Prof Segev for some clarity (the author of the article)He just replied and said that they don't have evidence that 'steroids are blunting the vaccine response' but results are preliminary.

PMRpro profile image
PMRproAmbassador

Links only turn live after you post them when they turn blue. It's working fine.

The report I saw last week about a similar study on cancer patients in the UK said that the cancer patients didn't develop an immune response to the FIRST shot but it recovered after the second PROVIDED it was given in the recommended 3-4 week window. I just skimmed through this and didn't notice that being mentioned. That is of particular relevance in the UK since the government decided quantity was preferable to quality - yes, but there are exceptions. It was also said from the outset you couldn't assume good immunity until 2 weeks post the booster shot - but that doesn't appear to have sunk in and people are behaving as if they are now totally immune. Which of course, they aren't. Especially in the case of the Oxford vaccine which had a lower response to the first shot even in healthy subjects (sorry, AZ).

"However, younger participants, those not receiving anti–metabolite maintenance immunosuppression, and those who received mRNA-1273 were more likely to develop antibody responses."

so patients on other immunosuppressants like corticosteroids (us, who almost never are put onto azathioprine or mycophenolate) are likely to have developed some immunity, especially if the 3-4 week window was observed and Moderna vaccine used.

These are links to articles about the other study:

scienceblog.cancerresearchu...

bbc.com/news/health-56351084

Longtimer profile image
Longtimer in reply to PMRpro

Gosh, what is one to believe anymore.....this, still the next statement...and so it goes on....I'm becoming cynical like my OH, his mantra is... ".you don't believe that do you"........

PMRpro profile image
PMRproAmbassador in reply to Longtimer

I'm not in the least surprised - but politicians wanted it to be so wonderful and couldn't be shut up. It's been the problem from the start - scientists rarely get really excited until the final results are in and been chewed over ...

Longtimer profile image
Longtimer in reply to PMRpro

Trouble is we don't really have much choice if we want the vaccine....the one you get (sometimes depending on your country you live in)..an d when we get the second one....can't help thinking there's politics in there!....but then I am becoming cynical.....been in too long with O H!....😏

PMRpro profile image
PMRproAmbassador in reply to Longtimer

So nothing should change - carry on living as we have been until the work has been done and they find out more.

Blurry62 profile image
Blurry62 in reply to PMRpro

My specialist ( in th US) said the vaccines would be less effective in immunosuppressed people, but "a little immunity is better than none."

Hmmmmm yay, I understand the hesitation and confusion. Both.

Blurry62 profile image
Blurry62 in reply to Blurry62

My concern is getting my immune system all ramped up and having it go after arteries! GCA is all about, ... So called, friendly fire- my immune system is going at the wrong thing. Getting it jazzed up for a small amount of immunity seems less than cut and dried.

PMRpro profile image
PMRproAmbassador in reply to Blurry62

But on the other hand - Covid seems to go for arteries and everything else. So the protection is almost certainly worth it.

agingfeminist profile image
agingfeminist in reply to PMRpro

Certainly! Any risk assessment at this stage makes getting the vaccine the winner.

agingfeminist profile image
agingfeminist in reply to Blurry62

I think there is enough evidence from all the people with a whole range of autoimmune diseases that have had the vaccinations that the 'jazzing up' is not happening. On the other hand there is the possibility of some protection from a disease that will present an enormous challenge to your immune system.

PMRpro profile image
PMRproAmbassador in reply to agingfeminist

And a lot of other systems!!

PMRCanada profile image
PMRCanada in reply to Blurry62

My GP said the same thing here in Canada. All those with autoimmune conditions and/or those that take medication that compromises the immune system are scheduled for phase 2 of the vaccine rollout which begins in April. Unfortunately we will have to wait 3 months between shots, and Canada in general is WAY behind as a third wave builds here in Ontario (sigh).

Constance13 profile image
Constance13 in reply to Longtimer

I don't think any of us know what to "believe". We're told one thing and a couple of weeks later we're told "that's questionable". Think I won't bother with the news any more. Can't remember when there was some really good news to report.😏

Longtimer profile image
Longtimer in reply to Constance13

Yes, couldn't agree more......

agingfeminist profile image
agingfeminist in reply to Constance13

Science can't give as definitive answers. It can just evaluate the evidence so far. It is a very complex picture...I think you get a good overview in this support group.

2013mayo profile image
2013mayo in reply to Constance13

Hi, Yes I quite agree 😀👏👍

Thelmarina profile image
Thelmarina in reply to Constance13

Perhaps the current good news is that cases are going down - probably due to the combination of Lockdown and the vaccination. Fingers crossed!

Constance13 profile image
Constance13 in reply to Thelmarina

Not in Germany they're not!!

Thelmarina profile image
Thelmarina in reply to Constance13

Sorry. My bad. You’re quite right. I was just thinking of my own country and forgetting how beautifully global we are here.

PMRCanada profile image
PMRCanada in reply to Constance13

Or Canada!

PMRCanada profile image
PMRCanada in reply to Constance13

I’m with you there Constance. I only check our local public health unit online for information. The rest of the headlines can be confusing and overwhelming. Since recovering from PTSD I’ve limited my “news” intake, and taken social media breaks.

9lives profile image
9lives in reply to Longtimer

My dad always said “believe nothing you’re told and half what you see” 🤣🤣.That’s my life’s mantra xx

Longtimer profile image
Longtimer in reply to 9lives

Your dad was right....my husband is so cynical I once said.. "Do you really believe I exist!!" . .....he has a sense of humour too and said , some of the time yes!......

Koalajane profile image
Koalajane in reply to PMRpro

So how are those of us who had the Pfizer vaccine affected?

PMRpro profile image
PMRproAmbassador in reply to Koalajane

It still isn't clear exactly what happens for us - the work was done on cancer patients and organ transplant patients who are usually on much higher doses than we are. As aginigfeminst says - still confusing at this stage. But what is certain is that we shouldn't rush out as if everything were back to normal - not least because of the mutations and the fact it isn't clear how much effect it has on transmission if you do become infected. You will have fewer symptoms - so possibly a worse situation regarding assymptomatic transmission until the work has been done.

Koalajane profile image
Koalajane in reply to PMRpro

I intend wearing my mask and social distancing for as long as I feel is necessary. I will not be meeting up with groups of people

PMRpro profile image
PMRproAmbassador in reply to Koalajane

Me neither ;)

agingfeminist profile image
agingfeminist in reply to Koalajane

Yep. A new way of living...and staying well.

Hollieby profile image
Hollieby in reply to PMRpro

Is anyone getting their booster within 3/4 weeks? both my hubby and I have got 11 and 9 weeks respectively between ours!

PMRpro profile image
PMRproAmbassador in reply to Hollieby

I and my husband will be - but we don't live in the UK.

Constance13 profile image
Constance13 in reply to PMRpro

We've got our second Pfizer jab on the 31st March - 3 1/2 weeks after the first jab. We're in Germany though.

agingfeminist profile image
agingfeminist in reply to Hollieby

I got my second Pfizer after 3 weeks. But I am also not in the UK.

agingfeminist profile image
agingfeminist

A confusing picture at this stage. I am delighted I got it. It might give some immunity...it might help if you contract the disease. I will just continue to be very protective of myself ...maybe try and get an antibody test...not that it gives a complete picture...whatever you get on antibody test, you can still react differently to the disease. Lots of research being done to tease this complex story apart.

PMRCanada profile image
PMRCanada in reply to agingfeminist

My GP here in Canada says the current antibody test only identifies if antibodies are present or not. It would be nice if they could quantify it.

agingfeminist profile image
agingfeminist in reply to PMRCanada

Even if quantified, it doesn't give the complete picture of how your immune system sill respond when confronted with the real thing.

123mossie profile image
123mossie

Prof dasgupta, a leading rheumatologist & our patron here has said people using pred may well not have as good a response but do have it anyway. Anything is better than nothing & you’ll have some protection

Mstiles profile image
Mstiles

This is so discouraging! I’ve had the two Pfizer shots in the recommended time period. I really had no reaction to each of the shots except for a bit of a sore arm for a day or two. This article makes me wonder if my immune system didn’t kick in and provide protection. I’ve been out and about a bit more, always with a mask of course.

Currently on 12mg pred.

agingfeminist profile image
agingfeminist in reply to Mstiles

So maybe you only have a 10% response, it is still better than nothing. The risks of side effects seem to be vanishingly small...and the risk of the disease is !!!!! Nothing lost by having the vaccine and perhaps something gained.

Bcol profile image
Bcol

Having read all this, my thoughts are what they have been since I received my Vaccination in January, that I will not be doing anything different until we see the results that time brings in. Home delivery works well, the work that I still do I do from home with no problems. Neither I or OH have any plans or desire to go rushing out to meet the rest of the population/world at any time soon.

agingfeminist profile image
agingfeminist in reply to Bcol

I love home delivery of food. I don't want to ever go back to going to the supermarket. Also get home delivery of underwear, socks etc., i.e. life's little essentials. I am delighted to remove myself from the shopping experience! I can even get all my medicines delivered.

HanaleiBa profile image
HanaleiBa

We’ll know soon- the UK Octavia study will show results as soon as summer. I’m frankly more concerned about long COVID anyway so even post-vaccine I’m behaving like I’m not vaccinated. I don’t want it at all. 🤪

agingfeminist profile image
agingfeminist

The truth is that because we 'vulnerables' are shielding in a totally responsible way it will be difficult to collect data on how vulnerable we actually are to catching COVID, or succumbing to the worst of it.

Thelmarina profile image
Thelmarina in reply to agingfeminist

Good point! 😀

Heron82 profile image
Heron82

The data is actually showing that although patients on immunosuppressants and chemotherapy do not respond as well to the first dose of a covid vaccine, they actually show a good immune response after the second dose. Data also shows that even if the vaccine does not confer complete protection, ie a small percentage may still get covid, the actual course of infection is a lot milder and subjects don't end up in hospitals.

Therefore you may be being far to cautious in restricting and limiting your living your life.

I am having my second AZ vaccination today and once lockdown is eased I will be out and about and embracing the new freedoms afforded by the vaccines and the scientists who developed them, healthworkers, supply chain people, care workers, shop workers, utility/refuse workers, and everyone else who have helped to get us safely through this pandemic.

The 23rd March is the UK day to remember those who very sadly and unfortunately are no longer with their loved ones.

agingfeminist profile image
agingfeminist in reply to Heron82

I think if you live alone, you are much more wary about getting ill. I also work every day and it is much more important to me to be able to do the few hours I work I manage most days than romping around in the world. I think I have discovered myself to be a natural recluse and love my present life...

Heron82 profile image
Heron82 in reply to agingfeminist

I too live alone and am also quite happy in my own company. However, we are social animals and it will be good to get out and about again. The shielding letter I had said to shield until the end of March, hopefully it won't be extended. I worry more about my balance living alone, my garden is quite large and needs lots of work. However it has kept me busy and helped keep my strength and stainer up. As has the dog walking. Some days though I slide down the wall at noon and have to rest.Stay safe and hopefully you'll have good luck with your next appointment and start to feel better.

Noosat profile image
Noosat

I am down to 1,5mg, so wonder if it affects me.

Lochy profile image
Lochy

I had my first dose of the Astra Zeneca vaccine on 6th February. I am part of the UK Biobank study and was asked to participate in an antibody study. The kit is sent to you at home and I did it on 11th March. I am negative for antibodies. They did say this might happen and it may take longer for antibodies to develop. I have no date as yet for my second dose but it’s likely to be early May unless the process speeds up. I’m in Edinburgh and they are making fairly good progress. I’m currently on 8mg of prednisolone and have been on steroids coming 5 years next week. At this dose and time period I reckon I’m still vulnerable.

agingfeminist profile image
agingfeminist

Do keep us posted on what happens! I had no reaction whatsoever to either of my Pfizer jabs...I think my doctor could organize an antibody test for but I read an interesting paper that explained that the antibody tests don't tell the whole story.

SandraLinks profile image
SandraLinks

I have been on methylprednisolone for about 18 months. I have been at 8 mg. for almost 3 months. (It is equivalent to 10 mg. Prednisone) I had my first Moderna vaccine on Feb. 2, with a sore arm and a little nausea. My second vaccine on March 2 was completely different. I had a huge response and ended up going to the emergency room. I had horrible chest pains, a slight fever, low oxygen and a head to toe body rash. It started about 15 hours after receiving my second shot and lasted about 24 hours.

agingfeminist profile image
agingfeminist

How very scary! What a relief it was over in 24 hours...dread to think what the virus might have done to you!

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