I arrived at my appointment for Covid vax this morning, and told the truth, the whole truth & nothing but the truth. I suffer fromPolymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration. I did not get my vaccination. The vaccine is scarce & can only be used in the UK for those on the list. The pharmacist showed me the Govt guidelines that everybody who gives the vaccination must follow. The pharmacist explained that they have changed & are only available for those over 75, unless your doctor says you need one, & then you will be able to get it at your surgery (this is true, my husband is over 75 & is getting his at the surgery on Saturday). The criteria for steroids…youhave to be on at least 20mg, & you have to be on that dose for over one month, NOW, in order to get the jab in England.I explained PMR users & flares…but he said surely even in a flare you would not be above 20mg for over a whole month. It was interesting to see the government documents & how it applies to steroid users. From my other diseases I have a weakened immune system, but none of those listed above is on the government list as allowed to have the vaccine this time. I hope this helps to clarify this vaccine rules for those living in England, as they have changed!
Covid vaccination in England for 75 & over & thos... - PMRGCAuk
Covid vaccination in England for 75 & over & those on 20mg steroids at this moment, & 20mg for over one month
The pharmacist explained that they have changed & are only available for those over 75, unless your doctor says you need one, & then you will be able to get it at your surgery (this is true, my husband is over 75 & is getting his at the surgery on Saturday).
Not in my surgery- I asked yesterday, and they aren’t doing it this time around…. Not been funded for it… so it’s a trek to a walk-in … unless any more hubs come online within the next few weeks..
It seems to be a postcode lottery. I got my vaccination with no questions at all apart from had I had any reaction to the last ones. My friend who is 71 got her spring booster after being called by our GP surgery never having had the “extra” ones before. She isn’t sure why she was invited but didn’t like to ask!
Post code lottery-yes as usual… and the normal community hospital I’ve gone to before doesn’t appear on the booking system… although it gives the dates…
It’s so unfair…I’m very fedup. Every time I catch a cold I get 8 weeks long chest infection, and have to take antibiotics the whole time…but still not considered vulnerable enough, or old enough!! Ridiculous,system, & so unfair…it’s the unfairness that gets to me, tbh! S x
That surprises me, & the pharmacist definitely expected all over 75’s round here to be going to surgeries, &, although not fed up (yet), he said he’d be spending most of his day sending people like me away…& still needs to get his full time job done! S x
I've just tried to get a walk-in one at pharmacy as advised by surgery - except it's not a walk-in one despite saying so on NHS online booking site!
Hard luck…I don’t think the organisation is the same anymore!
I have just cancell d mine because I don’t want the Moderna. Try to find a walk in and if they are doing Pfizer- impossible. Surely we should have a choice
A choice? It’s free…& the choice is…have it…or don’t have it!! And not if you’re not eligible in England. Never seen anybody refuse on choice, but rehabs you had abad reaction to Moderna?!
Yes. After the 3rd Moderna I was left with a use last for weeks. The first was ok. 2nd painful and the 3rd nearly laid me out. All in the space if 7 months
If you are on 20mg of steroids for over a month, you meet the criteria for steroids taking to need one, & could see your Dr & ask if you can get another make. Surely they know your position, & it’s on your medical notes!
I am not on Pred at the moment. Been Pred free since 1/2/24. Although I did take 5 mg two days ago to see if the aches and pains are PMR. It worked but have to wait I suppose to see if things get worse
But then you don’t need the Covid booster, surely? Unless you have other medical complaints that make you immuno suppressed.
I was invited because I am going to be 75 😊
I agree with the others: sounds very much a postcode lottery and different policy with each health trust. It seems very unfair they’ve changed the policy from before.
but we don’t know why it’s changed! Perhaps the medics have now discovered that the Covid virus seen these days will be fine for people who are on doses of steroids up to 20mg. They may have concluded that they don’t get any more sick than somebody fit & healthy. The policy changes to fit what they find out about the disease. My Dr told me some time ago that people on 10mg & under are not immuno suppressed at all. He couldn’t understand why they were being given to people & he said that if that’s all I was suffering from, he would say no to giving me a jab, as I wouldn’t need it,
I cannot begin to tell you how angry this situation makes me feel. There is no age, no pre-existing health condition or none, which makes it safe or okay to get sick with SARS-CoV-2. Witness the efforts to force sick children to go to school because absenteeism is so high. Or the difficulty finding people to staff our hospitals or transit systems. Or the rate of "excess" deaths. It's not because children are malingering, or people don't want jobs. It's because they are either sick themselves, or burnt out because they have to continually fill in for those who are.
But there’s nothing we can do about it, is there? Covid is no longer the threat that it was. I guess, in England, they will pay for more people to have one in the autumn to prevent winter sickness, but the threat at this time of year is less! Or I’m wrong, & in the autumn it will only be 75 and over, & those who are on cancer treatments which lower your immunity so much. In previous years, they knew nothing. They thought it was important to ‘jab everyone’! That’s no longer the case. It will vary round the world. It’s now being treated like ‘flu (nearly…flu vaccination is annual here. I’ve been getting it since I was 50 because of my lung issues, but they don’t meet the Covid criteria!)
As far more people continue to die directly of covid than influenza, it simply doesn't make sense. This doesn't include those who have died of "something else" which wouldn't have killed them if they hadn't had covid. It is now well known that SARS2 disregulates the immune system which contributes, along with too low vaccination rates, to worrying increases in illnesses which were not of wide concern in recent decades. At least here I was still eligible for a spring dose (over 65), as was the same fairly restricted list of immunocompromised we've had all along (pred dose 20 mg for example). They are still vaccinating people who never had or didn't complete the original primary series, plus certain ethnic groups deemed more vulnerable can get a spring dose if they are 50 or older. But that still leaves out nearly everyone who goes to school or is in the workplace, and is therefore the most exposed to every airborne disease going. Sigh. It's only age which made me eligible, not the fact that I took prednisone for 9 years for an autoimmune condition!
Sadly here the age this time has been raised to 75! You may be right in what you say, but, in the end, it may have more to do with budgets than anything else!
Here in Wales, my husband who is over 75 got his Spring booster yesterday afternoon at our surgery, but as I put in an earlier post comment, I was told that I wasn’t eligible. The receptionist reeled off a whole list of people who are eligible including being on corticosteroids, but having been started on 15mg for a month wasn’t high enough. It’s a bit ironic that two weeks after I went on Pred in Sept 23, I got Covid for 4 weeks and my husband didn’t. He now gets the booster, but I don’t, although I don’t begrudge him it.
Yes, but at least you were treated as per Govt rules. I guess you came through Covid unscathed…hopefully…& that, in itself, shows that you are in the category that doesn’t need it!The virus has altered a lot since the pandemic & I think that’s why 5he criteria has changed. It’s good news, really, as it means anybody under 75 who is on under 20mg steroids should be fine if they catch it! S x
I think that is a bit sweeping - the Covid itself may be survived but the long term effects are significant.
I don’t know exactly what the Welsh NHS guidelines are, or if they are the same as England. I think it’s more a question of economics. The Welsh NHS is umpteen millions in deficit and last year the health minister said “difficult decisions will have to be made”. This must have been one of the easier of the difficult decisions. It will be interesting to see what the criteria are for the Autumn booster.
I think the NHS in England is in such a bad way, they should be trying to cut down unnecessary Covid boosters! I, personally, waited four years to see a neurologist, 2 years to see a rheumatologist, & now 18 months to see a different rheumy, with no date yet. The Neurology dept was allowed to hire another Beurologust, or the wait would have been even longer. It’s the same for other specialisations, too. Definitely a bad time to be sick, for sure!!
And don’t even dream about an NHS dentist……
The virus has certainly changed and, because of the lack of protections where I live, orders of magnitude more people are dying of SARS2 than did pre-vax with protections. Most are "over 65" but that's all the info conveyed. Are they 80+ or 65? I also think the reason I have not, after nearly two years, heard a peep regarding my referral to a cardiologist is because they are flat out exhausted looking after all the new cardio related conditions in younger adults.
I think it's a big plus under the circumstances that pred is, for now anyway, in my past, but sometimes I wonder if even my low dose pred was controlling other things, e.g. a very sensitive skin.
my wife and I, both over 75, are booked in for our Covid booster this coming Saturday, at our Health Centre. All organised by texts and text links for booking appointments. Malvern, Worcestershire.
Of course. All those over 75 receive one,bwhether immuno suppressed, or not.
Just a little add on. When I had mine on Monday the pharmacist said anyone on biologics should be having it.
Not surprising. We didn’t cover 5hat as I’m lucky enough not to be on one!!
I'm really sorry to hear you didn't get your vaccine. I live in England too and have had a message from my surgery to say I am entitled to one. I didn't ask, the message just came. So far, I've had every booster and have never been turned away. I will be interested to see what happens on Friday when I go in to book the appointment, because I'm now down to 7mg steroids a day, nowhere near 20 thank goodness! I will post what happens on Friday.
Just to add to this, I'm under the age restriction at a mere 62! Certainly what everyone is saying about it being a postcode lottery seems true 😞
My friend, who lives near me, has been notified by the NHS app to go and get a covid booster for the first time. She has ulcerative colitis, but has been in remission for over 10 years and takes no meds. I, on the other hand, usually get invited but have heard nothing. We're both in our early 60s.
I’m intrigued that youare usually nvited, as you don’t take steroids! But I realise you have other medical diseases that may make you immuno suppressed!
If you are on Methotrexate as well then the minimum Pred requirement for COVID vaccine is lower. In those circumstances, I believe the Pred is 7.5 rather than 20.
Of course, that’s different. He didn’t have all day & I couldn’t really ask for a copy of what he showed me!!
Had mine yesterday, not yet 75 but was given it when I said I was on steroids, he didn't question the amount. Couldn't get it with husband at our gp surgery because all the slots were full anyway because our surname begins with W. Daughter complained at school that her name wasn't And Heather, after that the teacher called the register in reverse alphabetical order.
Lucky you! May I ask what amount of steroids you are taking at the moment, please?
Just going from 7 to 6.5 but as I say he didn't ask, I think he would probably have given it to me without that as I'll be 75 in 4 months time. There was a big queue and quicker to give it to people rather than argue the toss!
Yes, that explains the lottery well…if you can find somewhere busy & with few staff you will probably get it whether you are entitled to it, or not!
I mite add I was invited by my GP surgery a week later by the NHS. Since I have cancelled the NHS have invited me again 😊
Yes, there’s a lot of duplication due to them using old records that were made during the pandemic. I received 3 invitations..but didn’t meet the criteria of 20mg steroids. My husband, who is old enough, received 4, & could go to our surgery, or a nearby chemist…or 2 other places. It’s a administration mess! I don’t think they know that people don’t stay on high levels of steroids for life with PMR!
I’m going for my Covid jab this afternoon. I’m 67 and only on 2mg Prednisolone but have been invited by email. I’ve been taking Pred for nearly 6 years and I’ve read the criteria for getting the vaccine and I think I might come under the last one on the list. This information can be found on the NHS website:
Who is eligible for a spring COVID-19 vaccine
You or your child may be offered a spring COVID-19 vaccine if you:
are 75 years or over (you need to be 75 years old by 30 June 2024)
are 6 months to 74 years old and have a weakened immune system
live in a care home for older adults
People who have a weakened immune system
You may have a weakened immune system due to a health condition, treatment or medicine, including if you:
have ever had a blood cancer, such as leukaemia, lymphoma or myeloma
have had an organ, bone marrow or stem cell transplant
have HIV (at any stage)
have a genetic disorder affecting your immune system
have certain medical treatments, such as steroid medicine (depending on your dose), certain antibody therapies, chemotherapy or radiotherapy (including those whose treatment ended up to 6 months ago)
take certain medicines that increase your risk of infection, such as azathioprine, dexamethasone, prednisolone, ciclosporin or mycophenolate (depending on your dose)
take long-term immunosuppressive treatment for conditions such as lupus, rheumatoid arthritis, inflammatory bowel disease, scleroderma and psoriasis
I’m going to take a print out with me and see what they say. I’ll get back to you, when I’ve been, with the outcome 🤞
Of course, if you have other diseases, it’s quite different! Interesting to see. The pharmacists instructions/rules were much more specific that those above. People with 5his E diseases should get it as 5hey are immuno suppressed. People with PMR who are on lower doses of steroids are not. If it’s possible, I will be stopping comments on this post now. As you can imagine it’s very frustrating to see others who aren’t meeting the criteria receiving the vaccine. Hope all goes well for you.
Good luck and let us know
Just incase this puts peoples mind at ease who wants, but is refused the booster, you immune level against SARS-CoV-2 may by now be much stronger than it was a few years ago for a number of reasons unrelated to generalised assumptions about being immunosuppressed or similar.
We have tested people since the very start of the pandemic and whilst we do see samples which show no vaccine response, it’s now very, very rarely now see negatives come through.
The vast majority of the time we detect a good level spike specific IgG antibodies, and also confirm T-Cells by proxy. (NB this fact only relates if the test is the COVID-19 BioCard due to the unique way it works).
Once previously confirmed positive, almost everyone responds to infection/vaccine not after 28 days but 7. This makes a huge difference to disease progression.
People on immunosuppressants mostly respond like those not on immunosuppressives, but need monitoring a management to understand the individuality of their circumstance.
On a simple 1-10 scale, if you have reached your carrying capacity - and thats say a level 8, a booster may not make it rise any further, so by the time that falls, (if you choose to monitor it), you will likely be able to buy a vaccine booster for £45 in a high street pharmacy.
If you monitor and your immunity level really is negative or weak, well I’d take that to my GP as evidence that the system shouldn’t be making assumptions when refusing access to boosters. A GP could run the test and get a result within a 6 minute appointment, albeit they won’t of course (to be fair) because of they way they get funded.
Here in Italy we get boosters on more generous criteria - but now it is only annually in the early autumn/winter season about the same time as our flu jabs. There is no argument when we say we'd like them on separate days. And everyone who gets one has an interview with doctor beforehand who quizzes you carefully about medical history and medications. And they err on the side of caution.
as you will have gleaned, the system here is that some get spoken to, if they are outside the criteria & some don’t! When you receive your invitation you are asked if you are immune suppressed & you have to say ‘yes’ before your get your appointment! That’s where the blagging comes in!! I could try & contact my Lung Consultant, but he’s promoted again now. He was on the television here during the pandemic & worked solely on that. We parted company as his suggestion worked where nothing else has! If I shield, I don’t catch the bugs! But then I get very fedup, it’s not a norm, wonder how those who moaned so often at the lockdowns would feel if they had to do it for 4 months of every year!! I haven’t had a sociable Christmas for 5 years now! But it’s now easier to pay for a Covid booster for my lungs! Just waiting until I can sit down without so much pain, tbh!! But, as you say, in Italy it’s just once a year, & I think England is moving towards that, too! S xx
No, not really, for me, personally. I don’t want one for PMR & steroids, I’m only on 2mg now. I want one because my lungs are bad & we have to shield every winter. But I posted because I wanted to let pmr folk on less than 20 know they are not considered to be suppressed. I thought it was 10mg & under that weren’t. It should be good news for those under 20mg, really, but everybody wants the vaccine…& I think a lot of people who have PMR think it’s the disease that makes you immuno suppressed, & not the steroids! I have to drive a 90 mile round trip to get one privately, & I’ve got a badly damaged Coccyx that makes car journeys very painful!! Thanks for posting your info, hopefully it will make a group of people happy that they are not immuno suppressed!!
Thanks for that comforting response. How, other than seeing a GP - very difficult - can I monitor my immunity level?
Thank you
why would you need to if your PMR is in remission? You’re not immuno suppressed, unless you have something not on your bio…so you don’t need to monitor your immunity level, surely?? Sorry if I don’t understand…
Depending on your country, you simply access it via covid19biocard.co.uk Hope that helps.
It certainly does. Thank you so much for your positive response. There are good reasons for me asking the question.
aside from the principle of the point, can you pay to get it privately?
Just becoming available now. I’m trying to book an appointment today, the reviews are good & bad, & I will let you know if it’s successful. We are thinking of going on hols in 3 weeks time & want to get boosted beforehand so it will be soon!
I’m very fortunate and am having mine on Monday thanks to injections I take for Ankylosing Spondylitis. Hope you get yours. Sounds very worrying.
No problem…I can go to my Dr, but we are working hard on 4 other diseases right now, & I don’t want to load more! I can go & find my lung consuktant, but I’m happy to pay £45…if will help the NHS in a tiny way! I used to pay privately for my medical stuff, but life changes after retirement!!! S x
Absolutely, I agree. Looks like I’m going to have to pay for my son who has severe ME and is Autistic who lives with me. Like everything now, it’s a ridiculous fight. X
As a mother you’ve made your own decision that you would like your son immunised. That’s an individual decision. Surely his Dr would give him the jab if he needs it & is immuno suppressed. You said you are on your Dr’s list.
The rules are very strict this year regarding low immunity
They are, but perhaps they are correct? Nobody seems to think that’s a possibility, but it has to be! As the pandemic recedes there will be changes, & one may be that a Covid booster is only needed in the autumn, like the flu jab. Nobody says there should be a flu booster in the spring, or moans they didn’t get one. Just a thought.
But that is because epidemic flu season is only in the winter and the vaccine wears off after about 5 months. Covid is not a seasonal virus and the risk is all year round.
I have no great opinion one way or the other because we only get winter Covid jabs though it is possible there are others available for the very vulnerable - from now until October life in Italy tends to be lived outside, reducing the risks anyway.
I would like my son to have the booster because when he got Glandular Fever, he became so unwell that he couldn’t get out of bed and completely missed the final year of his education and four years later is still too unwell to leave home. I dread to think what would happen if he caught Covid so I’m happy to pay for it. He doesn’t fit the criteria at the moment for the free NHS one.
Oh, I agree. I had glandular fever & missed a whole year as a teenager, too. They never said if it was that that caused my later (& ongoing) inability to catch a common cold without heading towards hospital 6 weeks later! I’ve often wondered about that, but we have asthma on both sides of the family, & a genetic disposition towards so many issues! I’m afraid to say that I’m 67 & still turn any common cold, lung complaint into dreadful asthma, chest infection & the norm is hospital or steroids after the 6 weeks. Hope he is luckier. I don’t meet many who have glandular fever, tbh.
I received a notification last week on the NHS app to say I was entitled to the Spring Covid Booster. I was at the surgery for blood tests the day after, (last Thursday) asked if they were offering the Booster, booked me in for 2nd May. Not sure about all the questions being asked , I suspect I must qualify by having a few of the conditions on the NHS guidlines.
I live in Shropshire and was invited by text and email to have the Covid booster. I'm 63 but also have Type 1 diabetes which may be why. But I didn't have the last one and I'm not having this one either.
I was invited by text & email, too. But type 1 diabetics should all get the booster, irrespective of age. That’s good!
after reading your post, and the many replies, I must say I am glad to be in NZ. Over 65's get free covid boosters as they become available, flu vax annually and Shingrex shots. Not tied to steroid intake as far as I am aware. Makes me annoyed that my 21 yr old granddaughter, who is in her 4th yr of university, has to pay for covid and flu shots when these are the places most likely to be bug ridden. She chooses to still wear a mask, most don't. The only barrier to anyone getting booster shots here is you have to wait 6 months after positive covid test.
I’ve had free ‘flu since I was 55, shingrix when I was 60 & every booster until now. All free. And I think they will be free on an annual basis, as long as I’m considered immuno suppressed. Nobody who just takes steroids at below 20mg for over a month is immuno suppressed. My Dr told me when I was on 10mg that, from a steroid point of view, I’m no longer imm7no suppressed. It’s good news & people should be happy about that!
Further to my post above, I have been for my Spring Booster this afternoon. There was no problem at all, the lady on the reception knew I was immune compromised when she looked at her computer. I told her that I had brought all my evidence with me but was never asked to show it.
The lady giving the injection asked me what medication I was on for PMR, asked whether I was on it for life to which I replied “I hope not but I have been taking it for over 5 years”. I was then given the jab without any further questions. Hope that helps anybody else wondering if they are eligible for the vaccine.
My appointment was at Boots Pharmacy and my dose at present is 2mg
Your experience, however, doesn’t mean you’re eligible, necessarily, just that you were lucky, & didn’t have somebody who checked their new rules! Unless, of course, you are on 20mg steroids (unlikely after 5 years), or have another disease which makes you immuno suppressed. The computer says most of us who were diagnosed during Covid years are immuno suppressed, but has not been updated in 4 years, & most people have tapered in that length of time!
My husband and I (84 and 80) both had texts from NHS. I went on the website and booked for us to get consecutive appointments on 1st May at our local pharmacy. Must ait was the easiest booking website I have ever encountered!
this is a screenshot from the guidelines - 10mg plus for more than a month is the threshold. I guess many dispensers don’t read down the table far enough!
His definitely didn’t have the second paragraph. He let me read it for myself. It was different layout, print size, print font (I worked in print production for many years & notice those things), & it only had the first paragraph. But I’m not on 10mg a day for more than 3 months before vaccination, either. Interesting to see there are different versions around!
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