Up-to-date information about vaccines, reactions and allergies.

[PMRpro]

Brought to my notice this morning - well written, factual and non-sensationalist:

bloomberg.com/news/articles...

[Bcol]

Thanks for this, although I notice they do not mention the Oxford AstraZeneca vaccine at all

[Rache in reply to Bcol]

I suppose it’s because it is not being used in US yet.

businessinsider.com/when-wi...

[MrsNails in reply to Bcol]

Peter, have a look at Telian’s Post from yesterday (For Me) with Prof Dasgupta’s talk on explaining Blood Results, l think you’ll find it very interesting.

MrsN

[Bcol in reply to MrsNails]

Hi Mrs N, I did try to yesterday but the link didn't work for me for some reason and I haven't had a chance to track it down on YouTube yet

[MrsNails in reply to Bcol]

I could see it OK Peter but l’ve signed up to You Tube ages ago for similar reasons & you can get it through the App definitely worthwhile.....

Angela

Regards to You & Your Good Lady

[herdysheep in reply to Bcol]

I had problems with think yesterday and today and then realised that I needed to put pmrgca etc into the you tube search bit - not general google or similar. It was worth the effort

[Bcol in reply to MrsNails]

Ha, just noticed that you have published said link yourself and it does work. I will look at it shortly - Thank you. Peter

[MrsNails in reply to Bcol]

Thought it was worth reposting with Credit to Terri & explaining it was on Blood Tests & Preparing for On Line Consultations

[Bcol in reply to MrsNails]

Just watched it through, very interesting, think I've now got brain ache but very worthwhile.

[Charlie1boy]

Thanks for posting this - very interesting.Paddy

[humlies]

Thank you - as usual useful and up to date information. I am looking forward to having my first vaccination tomorrow!

[herdysheep]

very helpful, thank you

[Blossom20]

Good article - thanks.

[aladymo]

Great Info. Thank you

[Hoofprints]

Thanks for posting this.

Am I right in understanding that patients with autoimmune disorders, including RA, lupus and vasculitis, were not included in any of the trials for the vaccines? If so, why not?

[PMRpro Ambassador in reply to Hoofprints]

Standard practice - very unusual to do drug trials with patients on medication.

There is currently a vaccine trial ongoing in Italy - with two groups of patients. One of the groups is ages 65-85 - that is also very unusual.

[Hoofprints]

I see. I just worry that with our immune systems not being normal in the sense of not being like healthy people that we never actually have any long term data on how vaccinations affect people like us. How will we know if people with autoimmunity are excluded from trials?

I'm flaring badly at the moment and wonder how my immune system would cope when it already feels so scrambled. I worry it that any immune challenge might trigger a longer autoimmune response. Do you know if there is any research on this in relation to vaccinations generally?

[PMRpro Ambassador in reply to Hoofprints]

I don't know specifics - I just know that rheumatologists say at all times that patients with almost all classes of autoimmune disorders should get the vaccines they require EXCEPT live ones, whether it is the flu vaccine or Covid. If you are so worried about the vaccine - which is safe in that it is not the live virus so cannot cause the infection - how do you think your body will respond to the real live virus? You get the flu jab? This isn't any different - except the disease it is hoped it will protect you from is far more dangerous. And this stage is what is called the Phase 4 trials - if there were problems with the patients with autoimmune disorders then they would change the recommendations. And that is the way it ALWAYS works.

[Hoofprints in reply to PMRpro]

I don't get the flu jab actually. And several years ago when I needed a pneumovax challenge to see if other parts of my immune system were also not working properly, my immunologist agreed that it was prudent to hold off for the time being as I was recovering from what was believed to be a reactive arthritis triggered by a ridiculously minor stomach upset.

My concern is not with the vaccination per se, but the difficulty I have when my immune system is presented with any kind of challenge- I have a disproportionate and almost deranged response that seems to carry on for a long time after I get infections and causes other problems, typically joints or muscle and neurological symptoms.

At the moment, I have progressive swelling and severe pain in my ankles and feet bones, shown to be inflammation on ultrasound scans. This has not been halted by the hydroxychloriquine, has also affected the soft tissue in my lower legs and I went on to form a DVT. I'm in a horrible flare which is not coming under control.

On top of that, I had a sore throat andfelt flu-like since Xmas and have had a cough ever since ( I don't usually get coughs and my COVID test at the start of January was negative). I'm now getting extremely faint and dizzy and am getting generally weaker by the day, having never picked up from all those weeks ago. So I am wary of taking any vaccination when I feel in such an unstable state at present, and I thought generally the advice was not to get immunised while flaring.

I am not anti-vaccination - I'm pro vaccination and believe in the benefits of herd Immunity acquired this way. But given how oddly my own immune system seems to act I have concerns about how I personally will be affected.

As someone previously diagnosed with M.E. the advice was to be wary of all vaccination, not just with live viruses. Some medical advisors in that community are suggesting patients hold-off getting vaccinated for COVID for a couple of months until there's more data on these types of patients, while others acknowledge the risk of vaccination versus the virus itself and advise to get the vaccination now.

That is why I wish we had data on those with autoimmunity and neuroimmune disorders showing how they respond. If we're in a category of people who are going to be given the vaccine as a matter of priority, it makes no sense to me to not have tested the vaccine on that population first to judge both it's safety for that sub-group as well as it's efficacy. People are going to be on the same meds when they get it after all.

[PMRpro Ambassador in reply to Hoofprints]

Then you need to speak to your immunologist nad get his opinion. You are one of the people I meant when I said there are specific reasons for NOT having it.

But look at it logically - you are suggesting that immunocompromised patients be a part of the clinical trial. That means a lot of such people must be exposed to the vaccine anyway. What is the difference since the data is being collected now? Rare adverse responses require thousands of test subjects and even then it is not until the medication is released for general use that the really rare ones are identified - that is the nature of clinical trials. To do what you want would add millions to the cost of developing a new substance and might well mean they aren't produced at all. The advice is that anyone who gets the flu jab should have this one - if you don't get the flu jab YOU need to take action for yourself and ask for specific advice.

I probably had ME years ago (when it was still called yuppy flu), I now have another a/i disorder but I have had the flu jab ever since I have lived here - I wasn't classed as requiring one in the UK. I have been fine.

[Hoofprints in reply to PMRpro]

Talking to my immunologist is a good idea and I plan to ring the department today. They have somewhat abandoned me to the rheumatologist since my diagnosis of urticarial vasculitis syndrome however - I have not had a follow up appointment with them for at least a year now.

Yes I take your point re costs of development etc. Just feel that I am caught between a rock and a hard place at the moment. I'm sure lots of other do too. Good to know you are fine with a flu jab.

[PMRpro Ambassador in reply to Hoofprints]

I think we all do. I have no idea when I and my husband will get a shot here in Italy. If he were to get Covid it would be curtains, no question about it given his lungs in a relatively good period! I have to go out to shop, until very recently there has been no online shopping here and what there is now doesn't really fit our needs - he hasn't been out since early November. But we are both under 70 - and there is a shortage of vaccine generally in Italy which has now taken matters into their own hands and are hoping for a home-grown vaccine by June. I believe it is in P3 trials already and one group of subjects is aged 65-85 - also rarely included in trials. If I had been offered the chance I'd have driven to Rome to volunteer

Luckily the weather is awful - alternating snow and arctic cold! Who wants to go out!

[Hoofprints in reply to PMRpro]

I really hope you get access to a vaccine soon, and your husband too. That must be a worry with his lungs.

My friend with polymyositis has lung fibrosis from years of disease. She is 60 and caught COVID 3 weeks ago. I was very worried for her given the lung problems, but she is pulling through ok now and without hospital admission. Her sats remained ok - miraculously! She stayed off her mycophenalate while ill and increased her steroids, which seemed to help. So whilst extremely fatigued still, the severe headaches, muscle pains and sweats have abated and her sense of taste is returning.

I know outcomes are different for everyone and I only mention this as a happy story of hope as we don't often hear about the clinically vulnerable having a good outcome. But best bet is to shield strictly and get the vaccination if you can. I think she will also have the vaccination as that was her doctors' advice, even though she's had the real deal now.

And you are right- grim weather makes it easier to stay indoors!

[Janstr]

Thank you. This is exactly the information I’ve been looking for