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AS and the covid booster

Hi
I live in the uk, so I don’t know how America is going with the covid vaccines.
Anyway I rang Gp and got through to a different department who said as you have AS you do not have the 50 conditions listed here so can’t have it. I said it’s an auto immune disorder and she said yes but you can’t have it as your condition not here.
I don’t anyone I can ask as even rheumatologist is not sure.
Anyone in the uk and has AS has had the booster?
Thank you
Jan

  1. Hi - I’m in australia and we have definitions of what is immune compromised which includes biological.
    If you are on a biological you should be considered immune compromised and able to get the vaccine. The simple principle behind it is your immune system needs more boosting to increase antibodies and help fight off the virus if you get it and prevent serious illness. I’m a bit shocked even your rheumatologist isn’t saying you are eligible.
    Have you tried this website- also a great resource on rheumatoid diseases and has a section on covid vaccines, infection and everything from mental health to if you get covid.
    https://creakyjoints.org/category/living-with-arthritis/coronavirus/

    Maybe you could find something there to share that may help?
    All the best and take care of yourself!

    1. thanks for sharing such a helpful resource!


      Also, I've just realised as I've been replying to another comment you made that we are both Aussies! I'm based in Melbourne. Great to connect with you in here.


      All the best,
      Anne-Marie (Patient Leader)





    2. hello sorry I am late in responding, I am having to sort out this complaint and send it with explanations of what AS, it was the occupational therapist but basically all medical professionals are the same in the uk, you have to ask them to wear a mask and some of them look at you with horror at the mention of a mask.
      When it comes to AS most of the medical professionals can’t even spell it, never mind understand what it is and just have to be my own advocate like I said to the other lady, in the uk covid is treated like a cold, unless you have long covid which lots of people are suffering from but having people take covid seriously is a joke here, I had covid last year and ended up in hospital and it wasn’t a cold! but yes some people might have it as a cold, but one of my friends a year ago ended up on a ventilator so it really gets to me when even the medical professionals don’t wear masks.
      Sorry but I think Australia is far more sensible then here in the uk.
      Thank you so very much for the website.
      You take care too.🙏

  2. Ive had all boosters and am up to date with Pfizer vaccines and have been diagnosed with AS.

    1. Hi No need to apologise sometimes we all need a place to vent and it sounds like you have been through a lot lately too . So I completely understand you’re needing to let it out . I guess I as far as covid goes I try to hold on to the fact that the symptoms are more like a cold type of thing now , although I still feel it is only fair for staff in hospitals to wear a mask and also patients if they can or wish too . As even a cold to us with compromising immune systems it can be so much worse when we catch a cold or anything for that matter . That’s good that you give alternative treatments a go , maybe the homeopathic person you see could recommend a remedy for detoxing from the vaccine symptoms . Or a preparation to have before the next vaccine if you chose to have it . Have you asked rheumatologist about a biologic ? I have found since taking Enbrel it has helped a lot . Sorry to hear it’s all been such a mess for you I hope from now on you get the proper treatment you need . Wishing you well .


      1. It sounds like you are doing an amazing job advocating for yourself Jan! It can be incredibly frustrating dealing with healthcare systems at times. I hope your persistence pays off and you get some the information and support you need.


        Wishing you all the best,
        Anne-Marie (Patient Leader)

      2. thank you, I have to as in the uk it’s coming free m anyone who can help you, you have to be your own advocate which isn’t right when you did some help.
        Yes very frustrating.
        Thank you 🙏

    2. Hi I am sorry to hear you were poorly with covid and ended up in hospital for a while . It seems like it effected some really bad but others hardly at all . Would you consider a natural route like homeopathy? I know this isn’t for everyone but I have been seeing a lady local to me and actually have found it helpful . Also she did a detox remedy for me too . The thing is although we need vaccines for some they can bring about unwanted sides effects too .,So sad that you gone through a period of life to then get hit by A.S now ! Where I live staff in hospitals are still wearing masks which I am grateful for as I work in one myself . As much as they are uncomfortable I do feel some protection from wearing them . Some people are still wearing them in shops too but most are not . I hope you stay well and keep us posted . All the best.

      1. hi Suzy yes quite a horrendous time actually I got PTSD there but that wasn’t from covid.
        Before this I was working and my husband as well but now my husband isn’t working and I am not,either and my husband is my full time carer, we are just about managing with bills to pay it’s a struggle, I used homeopathy/ acupuncture and aromatherapy and much prefer the alternative way as I know it helps, I used to use it CBD cream but haven’t been able to buy as it’s gone way up in price.
        I am glad it’s helping you, yes if I had been told that there was a possibility of it triggering anything then maybe I wouldn’t of had them I don’t know, i didn’t even know nothing about AS and the consultant had to have a meeting to double check it was that but after two MIR scans they knew, no one understands unless you have it, they think it’s a bit of backache and everyone has backache so I don’t bother explaining no point.
        Yes it seems everywhere but northumberland and Newcastle have masks in hospitals, but up here in the hospital like most of the people they think covid has just gone away!!! The attitude amazes me it really does and have lived here for over 25 years.
        I feel all hospitals should have a mask wearing policy but it’s not, tomorrow I am at hospital again and only person in there with a mask on, and when I ask the nurses to please where a mask they look annoyed and angry
        It’s just ignorance and drives me mad,
        Patients while I wait cough and sneeze it’s terrible.
        Plus I supposed to have the covid booster in April and the GPS who you can’t see anyway messed up as usual, I said in April about the covid booster as with this I am eligible but they said your not and I said I was and they said you don’t have one of the 50 conditions and stupid me I believed them,I don’t usually do that but I took notice and even the physio agreed when I spoke to her, yesterday I managed to speak to a rheumatologist as they are hard to get to talk with and said about the vaccine, she couldn’t understand why I was told that and definitely should of had it April and now I can’t as due to having the next infusion soon as my knee has healed I can’t have that as well so everything mixed up thanks to them.
        With the infusion I am in bed at hospital in a ward for three hours I can’t move and I can’t wear a mask either and now unprotected thanks to the Gp.
        So I am fed up, angry and annoyed.
        I made a complaint to NHS England but they said not much they can do.
        Anyway sorry for my rant yes I will keep you in touch.
        Take care
        Jan



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