bbc health " no need for 4th shot" article yesterday there was a note that still needed for CEV . Confusion upon confusion!
4th shot still needed for CEV: bbc health " no need for... - NRAS
4th shot still needed for CEV
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Hopeful1
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Sorry it did say 4th shot still for immunocompromised .This was from Jcvi chair statement.
No mention of the immunosuppressed in the 10pm BBC News during their report on no need for a 4th vaccine. But an online BBC written report did say the immunosuppressed will still be having a 4th shot, or booster...call it what you will.
Hello Wishbone - I've been trying to get an appointment for the 4th covid jab without success. My third primary pfizer was more than 3 months ago, but the on-line booking service say I've had my third and won't book another. I phoned 119 and they said much the same - they have no instructions to book a 4th jab - call it what you will.
The GP is not handling any vaccinations and rheumatology have no information. I live in Kent, so it may be a local problem. Others on similar medications seem to have either had it already or have an appointment.
I am taking methotrexate and a biologic (Infliximab).
It may well be a local thing, but not sure how others on similar meds are going before you. Might be a good idea to get in touch with rheumy and ask for a letter saying you qualify for a 4th vaccine as I and others here have done. Neither is my GP interested in the vaccines.
Are you in Scotland? It seems better organised there.
Thank you for your reply. I have to contact the rheumy helpline on Monday so I'll ask again. The situation does change suddenly, but how confusing it all is! I'm also 86 years old which is an additional hazard I'm told!!
Blinkin' confusing! I'm in Wales and I'm not sure it's any better organised here, at least as far as my area is concerned.
Good luck and let us know how you get on.
Thank you. I'll see what happens! I continue to be very cautious because of mixed messages coming from the media, not to mention politicians, but another dose of vaccine if on offer will be very welcome.
My daughter lives in London and many of her colleagues, although triple vaccinated, have diagnosed positive with omicron. None of them is seriously affected - but they can pass it on, presumably, if they don't isolate for the required period. On the Underground few people wear masks although advised to.
What a life, eh! Let's hope 2022 brings better news for all of us.
Hi there, I read the JCVI advice thanks all of you on this wonderful forum and then contacted my rheumy nurse about getting 4th vaccine. She said it was being handled by the GPs. The GP said to call the vaccination phone line direct (they gave me the number) and I spoke to an operator who booked me in for that day! Not sure who needs to hear that but may save someone time although I know it’s being handled differently across areas.
I'm calling the rheumy helpline today - but my GP doesn't handle the vax.
I filled in the form on the JCVI advice line and was abruptly told I had already had my 3rd vaccine! Well, I know that! It was the 4th I was trying to book.
I had no trouble with the first 3 jabs - all went very smoothly.
Phoned the rheumy nurse - told to phone GP.! GP can't help, but I was told to wait until I'm contacted.
I'm seeing a District Nurse on Thursday - so she may have some information; but somehow doubt it. I shall try the JCVI advice line once more, as the situation does change rapidly. Just keep on keeping on!
Saw this today. bmj.com/content/376/bmj.o30
No wonder people are confused but of course it is still a fast moving and fluid situation. I just wish they'd offer an NHS test to check not if immune but have we had it. Then we might find out just how widespread it is or was as the media could be making it worse. If it's like a heavy cold then why are so many still in hospital and exactly how many of them are not vaccinated.And personally I think good on Australia not letting the tennis player in. He can leave anytime he wants too and if its true he had it why didn't he just say ?? Clearly there is one law for all, not like here when its one for us and another if you're in number 10. Sorry rant over, but everyday the UK seems to be in more confusion and don't get me started on track and trace.
Rant on m-l! 
Call it my pandemic induced personal paranoia, mistrust and selfishness, 
but along with the unvaccinated I'm interested to know how many immunosuppressed people are being admitted to hospital. All I keep hearing is 90% are unvaccinated.
Also, and this is probably a daft question to ask, but if omicron is a milder variant than delta, does that mean many of the immunosupprresed and other CEVs can relax a little as we won't get as ill, or worse, as we would with delta? Can't say I've heard any medical professionals say one way or the other and I'm certainly not getting lulled into a false sense of security by the upbeat messages coming from politicians and much of the media.
Not asking the above to you in particular m-l.
I think the fact that the nhs have sent PCR tests to those of us on immunosuppressants, in order to get treatment quickly, suggests that we could still get very Ill. I know of someone with RA who despite the antivirals still ended up in hospital for 3 weeks, and has just been discharged home on home oxygen. One of my friends is a paediatric itu nurse and also had antivirals. She stayed at home but needed an oxygen concentrator, and 2.5 weeks later still sob. So stay safe everyone 🤗
Thanks Maureen, I did think we could still become seriously ill, which I suppose could mean that a more infectious variant like omicron is just as, or even more dangerous than delta to CEVs at least. On a more optimistic note, it could also mean that after infecting most of the population, omicron peaks and subsides quickly hence far fewer people around with covid to infect the vunerable...the herd immunity thing. Providing another dangerous variant doesn't come along that is. Sorry about your friend and hope she improves soon.
But the numbers still show that the majority of people who end up in hospital very sick…..are unvaccinated…& it’s probably also the case that the vaccinated people who have to go in to hospital have some underlying condition that has caused them to react more badly than expected.But as we know we could be susceptible…we are looking out for ourselves.
We really have got to start being optimistic & really only listen to the scientists who know what they are talking about.
I have to smile when I see SJ open wide his Bambi eyes….struggling to remember what he was supposed to say to instil confidencev! 😟
I think we've always looked out for ourselves, no choice really if we don't want to catch covid. Sure, the majority in hospital are unvaccinated, and yes many of them may have underlying health conditions as many members here do on top of being immunosuppressed. No doubt there's a percentage of people in hospital who haven't been vaccinated because they can't for health reasons, or don't believe in it, or think covid is like a common cold, which it is to many fortunate people.
Government obviously emphasise the figures for the unvaccinated in hospital to try and convince people to get vaccinated, which is fair enough, but I can't help wondering about the other vaccinated 10%, or more and why we don't hear it through the main news channels such as the BBC. Not sure what the reason for that is, but suspect governments want to avoid announcing negativities about the vaccine if they can help it.
Guess I must be a born pessimist, or is it a realist, as I struggle to find many reasons not to be with a variant as infectous as omicron spreading throughout the country like it is, which may well be worse news for the CEV than the more severe delta as many healthy people won't feel the need to take precautions and even carry on with their daily lives with milder symptoms. If you can give me valid reasons to be optimism then I'm all for being optimistic?
But what % of those unvaccinated would be fit& well if vaccinated?
Most doctors I know personally & those I have seen on the news…BBC or other Chanel’s…..agree the reason this country has done well persuading people to get vaccinated & think our death count would be way higher if vaccinations hadn’t been provided quickly for free.
I think some people just get on with their lives & roll with the knocks…others feel the need to go in to every little “ what if”…& even if they got their own personal daily Covid report….they would still ask..”But what if”?
I think the first group are the happiest right now.
We can but guess the % if they don't inform us. Not that it's important to know, I'm more curious than anything.
I'm not saying we haven't done well with the vaccines, at least with vaccines 1 and 2. That said, there's no denying the disappointment over the high % of the immunosuppressed who appear to be getting little or no protection from the vaccines....there I go again with my "yes but".
As for getting on with one's life, that is exactly what I do despite the difficulties and risks with having to use public transport among other things.
I'm waiting for reasons to be optimistic? Not saying it's not going to happen, but that day hasn't arrived for me quite yet........
As a little girl with no daddy…I was always told you make your own luck……..don’t sit & wait to be informed…find out.
Back then the daddy’s always took the kids swimming…my mother wouldn’t even paddle…..so my granny paid for swimming lessons & I kicked A good & won the swimming races….although I hated it…at 10,11, 12…I wouldn’t be beaten.
If you sit & wait for reasons…you could die wondering, & I’m much too curious for that!
Not sure what you are trying to say here, or should I say accuse me of, if it's sitting back and waiting for reasons then that is one thing I certainly don't do. I think some of my past posts prove the very opposite...I prefer to be a "what if " sort of person rather than an "oh well" type.
I'm not criticising your stiff upper lip attitude like you appear to be criticising my way of thinking...we can't all be the same. Sorry AC, but for now I can't find much to be positive about, at least not for me, others like you may differ of course. If I was a healthy bloke then I would be far more upbeat with the current situation, but unfortunately I'm not. That's not to say I'm permanently down in the dumps or locked up inside my house, I get on with life just like most people. As soon as I hear some positive news I'll be among the first to raise a Jack Daniels or two there's nothing I'd like more!
Anyway, don't think there's much more to add so I'll leave it at that, otherwise there's the risk of just going around in circles.
Rake care
I’m just saying that if your mindset is ‘until “they” inform us’…..even if you then say that’s not important…it seems you feel we should be awaiting instructions from somebody.But as we all view this pandemic differently ….as you say…..the only thing that matters is if we are comfortable with what we believe.
My mindset is waiting for instructions off government, or from anyone else for that matter!!! Give me some credit...I stopped doing that and went with my intuition and common sense soon after the onset of the pandemic, which has proved to be more than justified as governments handling of the crisis has since shown...at least in my opinion. Feel free to read some of my old posts, which make it clear that I go my own way and have paid little heed to the mixed messages and guff coming from any government.
Not sure what you are trying to get at with regards to "until they inform us" ? If it's to do with me wondering about the 10% vaccinated in hospital then that's nothing to do with "awaiting instructions". Seems as if you are trying to put words in my mouth. As for me saying it's "not important", maybe I should have said "it's not "that" important", which it isn't in the grand scheme of things.
Feel free to respond if you wan't, but I've said all I need to say and will be spending the rest of the afternoon listening to some good sounds on my stereo. I may even indulge in a tall Jack Daniels on the rocks. 
edit...pass on the Jack Daniels...forgot I have a dental appointment at 6pm. 
Sorry to hear about your friends. I caught Covid in August on my first trip out after shielding for so long & although didn’t go to hospital GP advised against & said try to manage with inhalers at home. 5 months later I’m still very unwell with extreme fatigue but not eligible for help as I had fatigue from RA prior to Covid ( basically fatigue not new) but this is a totally different level spending most days in bed. I also havnt received a pack from NHS England with PCR etc. Also there has been no mention of my Booster so have had to spend hours arranging it myself. Sorry went off track there just ranting. What I meant was yes I agree with you that we can become very ill. I also have Asthma & Bronchiectasis so feeling rather let down by the system currently 🙁 x
Sorry to hear you’ve struggled since Covid. It’s a disgrace that your not eligible for help because RA causes fatigue. I’m sure you feel the difference. I had a lot of pushing for my 3rd vaccine. My daughter got married in September and we had 60 guests so I was keen to be protected as best I could. In the end my MP had to sort it, but it was a week after the wedding. Thankfully everyone did a LFT and noone caught covid.
You can ring 119 from tomorrow option 1, and request a PCR kit saying you meet eligibility criteria, I assume your on immunosuppressants. I too have asthma and have fused ribs, so no chest expansion. Was referred to respiratory who say I have lung damage from aspirating acid, and pockets of collapsed lung due to them being unable to inflate fully due to the fusion. My chest expansion is 0.8cm. So I’m told my chances aren’t good if I get it and it goes to my chest. My was told for 7 months I had pulmonary fibrosis and had a life expectancy of 2-5yrs, but last month she said they sent my scans to the Brompton who say it’s damage from acid, so hopefully can be controlled. Also have a hiatus hernia due to the diaphragm being weak from not expanding fully. All thanks to my ankylosing spondylitis, the dusease that keeps on giving. So been told to effectively shield again. Thankfully I’m medically retired, I don’t use public transport and get food delivered again. Stay safe, despite what government say, this virus is still potentially dangerous to us 🤗
Bless you. You also have a lot going on or as most of my consultants say "complicated" at least if you are under the Brompton you are in the right place. I was diagnosed with small vessel fibrosis & a small mass on X Ray for new Biologics 5 years ago & had regular CT's as each one showed more nodules (that was what the mass was) they are now stable but after being hospitalised with Pneumonia in 2019 I developed Bronchiectasis. I've had Asthma since a child. Because of both of those I have to say I expected if I caught Covid I would be hospitalised but wasnt so i'm very pleased about that at least. Yes i'm on Abatacept injections weekly. Yes I will be calling 119 tomorrow. I'm used to sorting out my own care now as my GP is worse than useless. Like you I rarely use public transport but since being diagnosed with Epilepsy during lockdown & hubby still working then I have twice had to resort to it. So lets see what tomorrow brings! Take care. x
Good luck tomorrow, hopefully you get someone who knows what your talking about. I’m not under the Brompton as the scans just show acid damage I’m staying local. She did say recent research is showing that aspiration may be a cause of the idiopathic pulmonary fibrosis, so we need to treat it aggressively and keep an eye on it. I had double pneumonia about 10 yr ago, not pleasant, took about a year to recover from it.
Good that your nodules have stabilised and hopefully remain that way. I was told if I arrested they would be unable to do chest compressions due to the fusion. Hopefully with the vaccines, that’s no longer a risk, but she also said I wouldn’t cope with ventilation due to the fusion and areas of collapsed lung, so I intend to stay safe. Most of my friends are nurses as I was a nurse for 34yrs, I haven’t seen any of them since omicron arrived, as it’s just too risky as they all work on red wards. So not much of a social life these days to worry about 🤪. Take care 🤗
It does sound like they are looking after you though. You definitely need to be careful. What a position to be in I’m sorry about that it must be there at the back of your mind during this pandemic. I too am a retired nurse. Had to take ill health retirement at 45 as RA was aggressive at that time having been missed 3 times by Rheumatologist at the hospital where I worked!! That caused a 10 year delay in diagnosis!! My GP asked me to go privately out of area which I did & was diagnosed at first appointment with sero negative. I’m still under that hospital in a different trust 22 years later. I’m also with respiratory in that area & Dermatology. As they don’t share the same system I’m left as the go between. Hey Ho. I’m not holding out a lot of hope for tomorrow as 119 promised to sort out my 3rd primary which was recorded as a booster but they didn’t.
We will see. Take care x
Your history seems so similar to mine. I had back pain from my mid 20s, at 29 I injured it at work and the A&E reg said there is something on your back that tells me your going to struggle with your back. I was shocked that I didn’t ask what. Then at 46 I developed polymyalgia followed a few months later with GCA. Rheumatologist refused to accept GCA even with vascular lesions on my tongue. A medical adviser spotted my post re tongue on the forum and PM me asking to get a referral to her in Leeds 250 mile away. When I seen her she diagnosed GCA straight away after doing ultrasound on my temples. She became concerned there was more going on, and when I mentioned about horrendous night pain in ribs and pelvis, she ordered an X-ray of the sacroiliac joints. That came back showing they’d fused, so she quickly referred me to her colleague who works with the AS charity. They were shocked that I’d been under local rheumatologists for 4yrs and they never picked it up. Unfortunately I had to be transferred back to the local team because of the funding needed for the biologics. I was 51 when diagnosed, 23yr since I first complained of back and A&E Dr commented. I believe he seen changes in SI joints, but biologics didn’t exist in those days. Unfortunately having been on steroids for 4yrs for the PMR & GCA I developed severe adrenal insufficiency. I was waiting to see an endocrinologist as I suspected I had an issue. 3 weeks before seeing him I had a massive stroke at 52, due to an adrenal crisis. When they checked my cortisol levels they were undetectable, and he said I was lucky to have survived. I was thrombolysed and made a good recovery physically but has left me with dreadful memory issues. So needless to say I was medically retired after that. Sorry for the long spiel. My endocrinologist is in London, my respiratory is in Medway 50 mile away, and rheumatologist local, which I would change in a heartbeat if I could. I now carry an emergency intramuscular steroid injection for illness or injury, although someone stressing me goid or bad has triggered the downward spiral and needing to inject. But hey ho still here and plodding on 🤪😂
Hi yes you really don't do things by half do you. That all sounds awful to deal with. when I first started with symptoms of a very swollen knee so was referred to Orthopaedics who drained it but it came back so I had surgery but the consultant must have cut into something & I had a haemarthrosis for a very long time. After several bouts of flu like symptoms over a year my GP referred me to Rheumatology but back then there was only 1 Rheumatologist who was nearing retirement & basically told me nothing wrong & to go back to work! That happened again a few years later & then a third time a few years after that when he actually wrote saying both myself & my hubby seemed greatly disappointed that I 'have a long tern debilitating condition!! That was when my GP asked me to go privately. I went to my nearest large hospital in Leeds & was diagnosed at first appointment. I'm still under Leeds 22 years later. I've also had similar situation being diagnosed with Epilepsy as my GP put it down to stress or panic attacks. I was even turned away by A & E after a 5 hour wait who said your muscles are tense you need a massage. It had been a seizure that I had earlier that day. Again my GP apologised saying there was a long 9-12 month waiting list & as I was having up to 3 attacks a day he would refer me privately. It cost me £2.000 for diagnosis! Oh well! at least i'm on meds now & going in the right direction. Anyway I rang 119 yesterday about the PCR kit but the man I spoke to didn't know anything about it. He spoke to a manager & then went through a list of questions. Do you have this condition etc. He finished by saying i'm not eligable. As we were going round in circles I just said thank you & hung up. I seriously don't have the energy for all this. My daughters friend caught covid at the beginning & was in ICU for a week then unwell for a long time. she has Asthma & takes steroids. She was sent a PCR test & she mentioned to my daughter that I would have one which of course I don't. She then caught Covid 2 weeks ago yet again but although she sent off the PCR test no one called her re anti virals etc. So the system didn't work anyway! Shes doing ok. sorry for the long text. Thanks for listening. Interesting you were in Leeds too all be it briefly. Take care xx
Sorry you have had similar challenges getting diagnosis and treatment. Strangely since moving back locally to my rheumatologist, my daughter has moved to Leeds and has settled there. It would be wonderful if I could go back there, as I could stop with my daughter. Previously I’d go the day before, stay in a nice hotel, wine and dine, then after appointment do some shopping before getting the train home. It’s sickening that you’ve had to go private and spend such sums on what you should be entitled to on the nhs.
So many people saying 119 deny all knowledge. If you are on immunosuppressants with an inflammatory arthritis, you meet the criteria.
Sorry to hear about your friends daughter. One of my nursing friends spent a month on a ventilator early in the pandemic, she has recently returned to the ward part time, I couldn’t do it. Also one of our consultants spent 2 months on a ventilator and has been unable to return. Only 3 members of the staff who worked on my ward didn’t get it. Now they face it all again, with Boris offering little help. Stay safe and take care
What sort of help were you thinking of Otto?More on the medical side …or do you need help with every day tasks like shopping?
If the latter you could ask social services to help with a list of organisations that help the house bound recovering from Covid.
Maybe the Practice Manager at your GP Practice could help with a referral?
Sorry for the delay ive been in bed for a few days feeling rougher than normal. I dont really know what help tbh My niece who had covid was referred to a long covid clinic which she says is good. Any input from my GP would be useful. Ive a phone call appointment on Friday which ive been waiting 6 weeks for since my last lot of antibiotics in December. Maybe I need some more. I just cant believe that they arnt even looking into other causes. Just feeling so unwell. x
Djokovic thinks he can Buck the system…..but is obviously not too bright…having press photos taken with children the day after he announced he had Covid last month! He apparently arrived in Oz on his own private jet…& the article said “ it is reported he has made over $300 million” for hitting a tennis ball….so I think he can afford to miss out on the Australian Open prize money for one year….
But of course…he is really put out …because if he doesn’t play & win…Roger Federer will still have won this championship more times than him….& he is very focussed on boasting he is better than everyone!
I do hope he really hates the hotel he is be located in by the Aussies! 😝
Even more confusion!
It is all a bit confusing. I was due my 4th yesterday but postponed it due to sinus infection, it’s now scheduled for 17th. I aim to keep an eye on things as I really don’t want an unnecessary further jab!
I hope that this Covid truly is going to burn out in the coming few months and become endemic rather than pandemic…
It appears that there really was no stopping the Omicron variant. Where more severe restrictions were imposed the infection rates have been about the same, as are the associated problems with such large scale infection rates.
Looking forward to spring and a better year for us all.
Go gently
I agree completely. I live near Dover where our numbers are 1300/100,000. My family in Scotland living under tighter restrictions are 2600, also a friend in Wales says his area is 3077. So it seems tougher restrictions aren’t stopping it. Think we just have to keep our distance and minimise busy areas till this settles 🤗
If much of Wales is like where I live I'm not surprised tighter restrictions are not working. If people don't follow the guidelines then they ain't going to work as they should, obviously.
I agree many are not following. However they still have nightclubs closed, and are stricter with pubs and restaurants re mask wearing etc. Also they are still required to keep to the 2mrule and meet with a max of 6 in public places. You would have thought that would make a dent. Seems nothing will slow omicron down. 🤗
Agree that there's no stopping omicron, just slowing it down, and that takes some doing by the seem. That said, as highly infectious as omicron is, you would think with stricter rules the infection rate would be a fair amount lower in Wales than England. The only reason I can think why it's not is enough people are not sticking to the rules in Wales, but what do I know. For what it's worth, I've never thought 2 metres was enough social distancing for delta let alone omicron.
Interesting what you say about acid damaging your lungs. I have pulmonary fibrosis and remember only too well googling to find out what it was after a receiving a diagnosis letter from the chest clinic and reading that l'd be a goner in 3 years...5 if I'm lucky! That was 6 years ago and there been little or no lung deterioration since. My respirtatory consultant told me it's not necessarily fatal and can even improve a little...fingers XXXX for that! I've also suffered with a lot of acid over the years and wonder if that's the cause of my fairly recent epigastric or hiatal hernia (yet to see my GP about it) I have, as with you.
Sorry to hear about your pulmonary fibrosis, I had just got my head round it all, and decided to work on my bucket list, when she dropped the bombshell that it’s not PF. Apparently it looks very similar on the scan which is why they asked the Brompton for their opinion. Apparently with AS PF normally attacks the upper lobes first, but mine is in the lower lobes, which had them questioning it. Good news though that yours hasn’t progressed, long May that be the case. My respiratory specialist says I may need surgery on the hiatus hernia to reduce the acid backtracking and getting into my lungs, hoping that’s not the case. The new med she put me on unfortunately interacts with my stroke meds, and increases the risk of further strokes, so waiting on them sorting that out. Definitely speak to you GP, I’ve read a few articles linking GORD to PF, so you want to have ut controlled 🤗
You certainly have more than your fair share of problems Maureen. It must have been a huge relief when told it's not PF. It took ages for me to get my head around PF...it was stuck firmly in the sand for a long time after being told and I still don't delve into it much at all...ie, see no evil, hear no evil, think no evil. My hernia has started to trouble me quite a bit and I have to wear a support a lot of the time. My twin brother, yes there is another one of me, has a much bigger hernia in the same place yet it's not painful like mine, plus it goes back in of it's own accord! Except for a bit of mild diabetes (surprised I don't have it with my luck) he's in much better health than me the lucky devil as he is .
You are so similar. I have an identical twin sister, she was born with spine abifida at her beck. She was lucky had surgery at 8hrs old which was a success, and has never been troubled with health issues since. I’m hbla27 positive, which most AS patients have, as she’s my identical twin she is also positive but has never shown signs of AS. It’s bizarre how that can happen that 2 twins can follow such different health paths. Yet we have similar lifestyles and diet etc.I know what you mean about burrowing your head in the sand. It is such a shocking diagnosis, then every time your short of breath your questioning if it’s getting worse. I do hope things remain stable for you, and that you remain safe & well 🤗
My sister's son had serious spine abifida but sadly died after surgery at 5 years of age back in the seventies. We are not identical, far from it, I'm much better looking than him even with my acne ridden face. That is bizarre how both of you are AS positive yet your twin sister has no symptoms. Less bizarre is that I've led a much healthier lifestyle than my twin for many years...my diet is better and I used to exercise a lot more than him with lots of hillwalking until RA put a stop to it. As for my PF, for the first few years, along with my annual lung function test, I used to regularly test my lungs by how breathless I was after walking up a fairly steep hill to my home (well, I am in Wales) from the nearest bus stop. Obviously nothing like as accurate as a proper lung function test but it did give some idea of how my lungs were doing. I hope things work out ok for you too. I enjoyed having a chat with a fellow twin. Take care.
They just want it all to go away now
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