Hi everyone , A fellow sufferer of PMR (who has been on steroids for 3 years and still on 10mgs due to ongoing symptoms ) recently heard that people with auto immune disease on steroids may not be suitable to have the vaccine.
I will explore this myself but wondered if any of you had further information.
Also can someone answer at what point ,if ever , are you classified as immunocompromised if you have been on long term steroids
No-one knows the answer to that yet - not even the developers. It will require clinical trials in such patients to see what happens. In theory it is no different from having the flu vaccine - and we all have that if we are sensible. So at present that will be speculation.
NONE of the vaccines are what is called "live" so the risk for the immunocompromised there doesn't apply. The question might be whether you will develop a good immune response having been vaccinated. Or whether the stimulation of the immune respose might be excessive in some autoimmune disorders.
Thankyou for your response, it is going to be interesting investigating this !Of course I have an annual flu vaccine which i have been fine with and i am desperate
not sure what happened then but my post was interrupted. I was going to say I am desperate to return to seeing my family and want to have a vaccine but want to make a relatively informed decision.Currently feeling positive as diagnosed in June and down to 11mgs (taken any time between 2am and 4am )using a slow wean .
Have walked every day but have help in the garden and rest most afternoons.
Pain still there a bit ,but under control and not planning to wean any more just at the moment. There is no rush with this illness or any race or goal to win.
As an ex ITU nurse I know only too well how important it is to have vaccinations and will be doing my own research into the pros and cons. Will look out for any info on this helpful site.
I haven't seen my lot since before Covid - and not sure I want to see the nurse anyway - she works on Covid ICU now! The other is an ACP and briefly was working on a unit with ?Covid patients but was shielded first time round and when her new letter arrived asked to carry on working - until occy health said sorry, but we must send you home as you have the highest level of vulnerable! Have to admit I'm not sorry ...
But there would be all the quarantine stuff too - they live in the UK, I'm in Italy!
Your comment... "Or whether the stimulation of the immune respose might be excessive in some autoimmune disorders"... is the main concern I have regarding having the vaccine.
My reaction to this years flu vaccine fuels that concern. First two days after the vaccine I felt pretty rough but thought that was a good thing as meant my immune system was doing its job and (hopefully), producing antibodies.
Three of four days later I had an acute ME/CFS relapse that lasted around ten days before settling down. But by the end of that period a PMR flare decided to rear its head and aside from the accompanying overwhelming fatigue the bi-lateral hip and thigh pain was severe enough at times to reduce me to whimpering.
Finallly, decided to increase pred by 5mg for ten days to try to bring everything under control. Day ten - better than I was but not better.
I would say my immune system reaction to the flu vaccine was excessive but whether clinical trials would be able to identyfy those autoimmune illnesses that may react in that way will remain to be seen.
Although it's been a pretty unpleasant seven weeks my view is the flu would have been worse!
hi Pipalina, so sorry to hear of your suffering following the flu vaccine . I had my vaccine in November with no side effects apart from prolonged pain in the muscle at the site of injection. Individual responses are so variable.You are right to say Flu could have been worse and of course there is the slim possibility it had nothing to do with the vaccine . I hope you are recovering from your flare and that you have managed to reduce your pred back.
These are challenging times made all the more difficult by underlying health problems and we must continue to support each other and keep informed as possible by sharing information
Yes - I think it is likely to remain a great unknown because I suspect it is a very idiosyncratic response with no way of predicting who will and who won't react. I had real flu once - and I have no desire to ever have it again! My husband missed his flu jab a few years ago and ended up with flu, in bed for 3 weeks and developing pneumonia and fluid on the lung which took 6 months to resolve completely. I had absolutely no adverse effects this year - not even a sore arm. No idea which vaccine we get here in northern Italy - GP didn't know there were various versions!!!
They all seem pretty ill informed on this. I'm still waiting for my latex free vaccination - it's been a month now since I passed on the info you gave me about the Sequirus vaccine and I have phoned weekly only to get the response that they are investigating it. In the meantime I got a call from someone else in the practice asking why I hadn't had my flu jab which I patiently explained and was told that they hadn't read the notes on my file. Yesterday I got the standard NHS letter reminding me about the jab so called surgery again got a promise that they will give me a ring back - guess what? I'll try again in a few days but I'm close to giving up.
Hi Pipalina, I had my Flu vaccine on 13 October and 3 hours later my PMR symptoms also returned from my left hip down my thigh, arms, shoulders and neck. It was the pain from this radiating into my head that was unbearable.
Checking online I read an article that said this would be a temporary flare so put up with it for 3 weeks as I was had reduced my prednisolone dose to 8.5mg for the first time in nearly 3 years and was reluctant to increase the dose.
I couldn't bear it any longer so increased my dose up to 13mg. Continued with this dose for 2 weeks but was still in pain so increased to 15mg 8 days ago. This has made it so much more bearable and I am coping much better at the moment, hoping it will improve further.
Having got down to 8.5mg and now back up to 15mg I feel I am almost back to square one with this reaction from the flu vaccine.
Who knows if it will happen again with the Covid vaccine, my GP said he doesn't know.
Hello Norski1 - I'm very sorry to hear about your reaction to the flu vaccine. especially as you had managed to taper down to 8,5mg.
I too had just managed to taper down to 8.5mg when I had the flu jab and also had to increase to 13.5mg in an attempt to bring the flare-up under control.
I hope being at 15mg for a few weeks will keep your symptoms at bay, if not, maybe you need some imput from your GP or rheumatogist.
Very best wishes to you - Kathy
I did post this on a previous post which may be interesting. Astra Zeneca are working on treatment for those with an immuno suppressed system:
“The UK will be the first country to begin clinical trials of a new coronavirus antibody treatment developed by drugs giant AstraZeneca aimed at people with a weakened immune system who cannot be vaccinated.
A participant in Wakefield, West Yorkshire, will be the first in the world to receive the pharmaceutical company’s new “antibody cocktail” as part of the trial to test whether it will prevent Covid-19 for up to year.
The clinical trial programme will recruit 5,000 participants, which includes 1,000 people from nine sites in the UK.
The aim of the trial is to evaluate the safety and effectiveness of a combination of two long-acting monoclonal antibodies – man-made proteins that act like natural human antibodies in the immune system.”
Sir Mene Pangalos, executive vice president of biopharmaceuticals R&D at AstraZeneca, said the treatment, which can be injected or administered intravenously, is aimed at those who have a weakened immune system and cannot be vaccinated as well as those who are unlikely to respond to immunisation – which may include hundreds of thousands people in the UK.
He said: “There is going to be a significant number of people – even in a world where vaccines are highly effective – who will not respond to vaccines, or in fact will not take vaccines.
“So having monoclonal antibodies as potential therapeutics is also important.”
thanks for info Piglette
I have heard this too but at the moment there is very little information about this in the internet.As the vaccine is being rolled out this week, they must have published the guidelines as to who or who aren’t suited to having this.
There is an ITN news article which flags up that this vaccine may not be suitable for those who have a compromised immune system in that it may not give you protection . The AstraZeneca antibody vaccine just bring trialled in the UK is potentially a more suitable vaccine for us with PMR or GCA
Has anyone any info from their consultant or GP regarding this..?
No-one has any such info - none of the results from the trials are in the public domain and only the committee and MHRA will make those sort of decisions or recommendations and anyone saying the Astra-Zeneca option is better is expressing an opinion or hearsay, not the reality.
This is the current status as at 4th December 2020:
assets.publishing.service.g...
but even it says
"This document was originally published provisionally, ahead of authorisation of any
COVID-19 vaccine in the UK, to provide information to those who will be involved in the
COVID-19 national vaccination programme expected to start in December 2020.
Following authorisation for temporary supply by the UK Department of Health and
Social Care and the Medicines & Healthcare products Regulatory Agency being given to
the COVID-19 mRNA Vaccine BNT162b2 (Pfizer-BioNTech) on 2 December 2020, this
document has been updated to provide specific information about the storage and
preparation of this vaccine.
Information about any other COVID-19 vaccines which are given regulatory approval
will be added when this occurs.
The information in this document was correct at time of publication. As COVID is an
evolving disease, a lot is still being learned about both the disease and the vaccines
which have been developed to prevent it and the knowledge base is still being
developed. For this reason, some of the information may change. Updates will be
made to this document as new information becomes available. Please use the online
version to ensure you are accessing the latest version."
Nothing is set in stone - and it can change from day to day as new informations becomes available.
COVID Vaccine question
COVID vaccine question 
Spring COVID vaccination
Dosage reduction with covid vaccine?
COVID vaccine side effects
