https://uk.yahoo.com/news/am-immunocompromised-va... - PMRGCAuk

PMRGCAuk

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uk.yahoo.com/news/am-immuno...

rustyrussell profile image
rustyrussell

Interesting read. What do people make of this

32 Replies

Good morning.Yes, interesting. The CDC is an American agency so, to be honest, I feel we should wait for the outcome of the British study on immunocomprised people to be published. I believe the Imperial College London is carrying this out.

I, for one, am keeping to the safety precautions I've always followed until we know more.

Nightingales profile image
Nightingales in reply to 123-go

This was the first I had heard of the study and I am really glad they are doing it.. it’s called the OCTAVE study and apparently they are recruiting but I couldn’t find how to volunteer. I tried to volunteer for the third vaccine trial but was refused because I was on Prednisolone.

123-go profile image
123-go in reply to Nightingales

I've just had a quick look and it says, 'various sites across the UK'. The main university, involved, it seems, is Glasgow. You may be able to get info from there.

PMRpro profile image
PMRproAmbassador in reply to Nightingales

Contact email is given at the bottom of this page

gla.ac.uk/news/headline_778...

Nightingales profile image
Nightingales in reply to PMRpro

Thank you. I have written to enquire so I will post their reply.

I think lifting of restrictions is bonkers when we have a) not yet everyone vaccinated b) no idea of the rate of vaccine failure as it was rolled out under a lockdown c) no idea how long people’s resistance lasts beyond any trial period and d) no idea of the ability of people to carry the new variants without symptoms if the vaccine offers a more limited cover. I think the idea of passports is going to just encourage people to act as though they are free of disease at all times in all ways and therefore safe to everyone. It’s happening already without passports. I was in a shop and a mask-less woman came in with a snotty toddler in a buggy and said, “don’t worry I’ve had both jabs!”.

To be honest the immunocompromised were never going to be fully saved by the vaccine as with any vaccine but also some non-compromised people. The golden hour in businesses is a good idea but I think the reality is that nothing is going to be rustled up to make life normal. I have a few friends who have real reason to worry, yet the flu season didn’t scare them because they had their flu jab, even though that still comes with the proviso that it won’t be as effective and there are other variants of the flu that are not covered by the vaccine.

We need more research, much more for longer and we should all assume the vaccine didn’t take, for now.

123-go profile image
123-go in reply to SnazzyD

Well said, Snazzy.

Bcol profile image
Bcol in reply to SnazzyD

Hear Hear

PMRpro profile image
PMRproAmbassador

It is saying what I have been saying the entire time - until the incidence in the general population has fallen very low because they have been vaccinated, no-one is really safe, even those who have been vaccinated.

It does appear that they have finally realised children do play a major role in spreading the virus even if they don't in general get very sick. But they appear to be catching the delta variant rather well and with a high rate of that there is a greater likelihood of further mutations developing. We could end up back where we were a year ago if a variation develops that escapes the current vaccines and spreads quickly.

I'm sticking to what I have done for the last year - it has worked thus far. As of today here we no longer need FFP2 masks if we don't want to, medical masks are enough. I have FFP2 masks ...

Niepowiem profile image
Niepowiem in reply to PMRpro

Hi,

there are two problems with covid jabs. delta maybe airborne so 1.5m distance not gona cut it and AZ jab not effective good enough and is being counted as a vaccine such pfizer is. Az should be counted as 1 to 3 so 100k of Az = 33k of pfizer

cheers

N

PMRpro profile image
PMRproAmbassador in reply to Niepowiem

The others were also airborne. Not getting into discussion about the wonder UK vaccine ....

Niepowiem profile image
Niepowiem in reply to PMRpro

Hi,

yap, let's not talk about all the denial that covid is not an airborne, btw. still not airborne in australia since the beginning haha, not even delta....

cheers

N

This is a difficult one to get right isn't it? Everyone has their own ideas of what's right & what's wrong, what we should & shouldn't be doing, how much we're protected, how to make the way forward safe for everyone. The simple fact of the matter is that no one really knows....we can make assumptions and predictions but we've still too much that we don't know enough about. For my own sanity, I have to believe that whatever protection my two vaccinations have afforded me, they will at the very least keep me out of hospital should I contract covid, but because I can't be 100% sure of that, I'll still continue to socially distance, be mindful of where I go (avoiding crowds) and use my mask whenever I feel the need to. Anyone who thinks this is all over if all restrictions are lifted in June are probably completely deluded. This is going to be with us for a while to come yet and whereas the way we have to live our lives will most definitely improve, we are not going to revert back to the old normal just because a given 'date' says so!

We have to continue to be sensible and responsible.

And I am allergic to ingredients in the vaccine so will remain at risk forever, as far as I can tell. I’m still basically locked in, alone and sheltered, seeing no one. Very hard for my healthy vaccinated husband.

123-go profile image
123-go in reply to Twopies

That's tough, Twopies!

PMRpro profile image
PMRproAmbassador in reply to Twopies

Is there none of the vaccines without what you are allergic to?

Twopies profile image
Twopies in reply to PMRpro

My doc said I shouldn’t even try one, he was pretty convincing. and I know someone, not immune compromised, who had an allergic reaction, was in icu for weeks, docs told family she wouldn’t pull through but she did. Scared the liver outta me.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Twopies

What component are you supposed to be allergic to?

Twopies profile image
Twopies in reply to GOOD_GRIEF

Dunno. Too stunned to ask. Doc also said the vaccines are Very Strong. I have multiple allergies and intolerances, can eat very few foods. Some docs have thought they started with the vaccine I received in 1989 before I went to Egypt. Been sicker than a dog every day since. I dont get any vaccines whatsoever since. But as for Covid, it was my doc saying no, I’m allergic, not me refusing. I was going to go for it.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Twopies

Personally, I'd be asking for some clarification on that. Nothing in the mRNA vaccines is associated with food allergies, for instance.

Twopies profile image
Twopies in reply to GOOD_GRIEF

I knew better than to give tmi which I tend to do in my posts. I wasn’t suggesting that the vaccines contained food allergies, I was just saying that I have multiple issues, including many allergies to medicines. Should have just said, “I didn’t ask.” Sorry.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Twopies

I understand, but I would be asking for more information in the face of a life threatening pandemic. But that's just me. The less information I have, the more rebellious I get. I'm not given to taking orders without question.

My rheumatologist has been telling me this long before Covid. Every time I made statements like "prednisone protects me" she would counter that "prednisone was putting me at risk". I think she was probably correct.

Fortunately, I'm off prednisone now. Everything I read suggests Actemra makes me better off because it only targets a specific part of my immune system. Prednisone seems to have wide ranging effects on the immune system.

I really don't know what to believe. I doubt anyone truly knows --- I certainly don't.

I was interested that the author has multiple autoimmune problems. I know that isn't a good thing! I can relate to the following paragraph:

"I'm one of them - I have two autoimmune diseases in which my body attacks healthy tissue and cartilage, and more broadly wreaks havoc on my system. To help treat these illnesses, I take immune-suppressing drugs that in turn make me even more vulnerable and prone to long-lasting viruses, infections, and other illnesses."

This is the simple truth!

Hildalew profile image
Hildalew in reply to DadCue

It will take me a long time to give up the belief that pred prevented people getting the massive inflammation that was/is one of the symptoms of Covid 19. It was one of the symptoms that reportedly puzzled medics in the early days in the UK.

I think it is to be expected that people with immune diseases will mount a less effective immune response to both the virus and to the vaccine, and, if not vaccinated, can be expected to experience more severe symptoms if we are infected with the virus. Those of us who are fully vaccinated should experience less severe symptoms.

Of course there are no guarantees, but being vaccinated gives us a better chance.

I can tell you that I continue to avoid indoor spaces and crowds, maintain social distance, observe hand hygiene, and wear a mask when I'm near other people of all ages. As a New Yorker, I am aware that we have people coming here from all over the world all day every day, by the thousands, some of them arriving just to get the vaccine, and you just can't tell whether they've been exposed or are carrying. I'm especially wary of emerging mutants, even though the Pfizer vaccine provides some protection for at least some of them, but no one with any kind of knowledge believes that this virus is finished mutating.

I expect this situation will continue for the long haul - meaning for years. As such, I am content to take precautions to outlive the pandemic, no matter how long it takes.

I believe the vaccine triggered GCA for me. Having had PMR years ago, I regret getting the vaccine. I had antibody testing snd it shows I have ZERO after the vaccines. So I definitely don’t feel safe.

why do you feel the vacinne triggered gca? I have had the secod vaccine and am struggling big time and the docs are feeling probably 'borderline' gca, had pmr for 4 years in 2015. what were your symptoms and how were they diagnosed?

Well I was absolutely fine until I had the vaccine. Fifteen days later I’m in bed with crushing headache, swollen veins in temples, low grade fever, blurred vision. Too much of a coincidence. I diagnosed myself.

peanutann profile image
peanutann in reply to peanutann

I should say if you have any uncommon condition here in Texas, if you don’t diagnose yourself, it may be too late. I jacked around with doctor for ten days before I finally figured out what was wrong with me.

I was worried if the shot did me any good so I had a test run to see if I had the antibodies. It came back that I do have the antibodies and I am as safe as can be. I have had pmr for 5&1/2years and am on 16mg pred.. Why worry about it when you can run the test.. It may not be 100% perfect but it is better than nothing.

Time will tell. I had side effects after the 2nd dose similar to others. Also had a positive test 6 weeks after for the antibodies resulting from the Moderna vaccine. I’m in a volunteer clinical program post vaccination. I just submitted another blood sample for testing a few days ago which is approximately 12 weeks post vaccination. These aren’t quantitative tests unfortunately, still will indicate whether the antibodies are still present.

My new norm has been to increase my personal space comfort zone. I wear a mask unless those who have also been vaccinated indicate they are comfortable not to. My position regardless, is I wear a mask out of respect for others and keep my distance. It’s not just about me.

PMRpro profile image
PMRproAmbassador in reply to Boss302Fan

" It’s not just about me."

Absolutely! This morning I watched a video of a member of staff from the Covid ICU in the main regional hospital which discharged the last ICU patient yesterday so have closed it down for the moment at least. A local video journalist has been making these videos of patients and staff right from the beginning. The nurse was asked about whether people should get vaccinated or whether they should feel free to not bother - and he said exactly what you said. It behooves us to do all WE can not to get or spread it - because the medical staff DON'T have the choice, and even if it is just for them we should do all we can and that includes having the jab unless there is a very compelling reason not to.

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