I am happy for all of you who got the 3rd vaccine (as opposed to booster) but what about those of us who have been told we are CEV, have had all the letters telling us to shield etc but only on 17.5 mxt or less. I feel like I am being ignored now. No more letters, no extra protection. Do I, on 17.5mg mxt, thyroxine (with an unusual thyroid problem) and have mild bronchiectasis, have enough immunity to be protected from 3 vaccines. I have heard nothing from rheumatology or my GP. I know I can ring either but conscious of the fact that they are so busy and I don't want to pester with something that might be unnecessary. Can anyobe advise me. Thank you. x
What about the rest of us?: I am happy for all of you... - NRAS
What about the rest of us?
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Sheila_G
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You get two vaccines and then a booster. There is a fourth booster coming some have had it others like myself haven't yet. I contacted my go and she has heard nothing in my area about a fourth booster yet.xxx
Yes thanks Sylvi. I know about the vaccines. I have had 2 plus a booster but don't qualify for a fourth. Just wondering how exposed that leaves me. x
It's not up to GP, 4th dose is down to your consultant. They have to put it in a letter which you take to a walk in centre. You can't book them.
I asked my gp because though they don't do them they would know if they were happening in my area. Also when i rang the vaccine hotline they said i was too early despite having a text message saying i was to get one.x
I had a phone call to go for my 4th (booster), my 3rd I had a letter to phone and book it..
Not sure about that as my GP contacted me about a month ago and I wonder if its something to do with shared care agreements often written about on here. I have no idea if I'm shared care but the medication that comes direct may be something to do with it. My GP said they were going through everyone and calling people in.
Hi Silvi. Did you get a letter from the NHS saying you should get a 3rd primary dose? I’d already had my ‘booster’ (3rd dose) by the time I got the letter.98 days after that jab I just took that letter to my local walk in vaccine centre, which happens to be at my gp surgery, and told them I was due my booster as 91 days had passed. The lady checked with a senior and said yes that’s fine and gave me the 4th.
It seems doctors have not been sent copies of these letters for their records. I’ve had to get them to copy it for my files. I’m only on 10mg at the mo, when I can take it but that’s another story, but have had steroid injections too. I hope you get sorted. And I hope yourself and Bob are feeling better. Xx
Phone 119 and explain you are immunosuppressed and that you are waiting for your 4th booster jab . They will direct you to a walk in service.
Yes, this is the case - you can get the 4th dose via a walk-in service.
I phoned 119 to book my 4th and was told they will start booking appointments, as opposed to walk-ins, from the beginning of February.
This applies also to booking on-line via the NHS site.
I intend to phone 119 once we are in February to do it that way. When I spoke to 119, I was told they were a little behind in getting the booking service going. The same applied to the NHS booking service on-line.
All is, as usual, a bit muddled. The pharmacy2U site where I had my first 3 vaccines won't take bookings direct, they advised waiting until either 119 or the NHS site on-line were up and running again.
I suspect that I was put on the CEV list unnecessarily as I was only on Methotrexate and Hydroxychloroquin at the time. I mentioned it to a rheumy nurse who said that the department had decided to put all their patients on the list rather than go through it in detail.I have since had a message from the hospital pharmacy which supplies my Metoject saying that I'm eligible for a 3rd primary and booster but again I suspect that they've taken a "belt and braces" approach and I'm planning to mention it at my rheumy appointment next week.
Personally I think that being on the CEV list was overkill and I didn't shield at any point although I have been cautious. I realised that getting all the letters, texts and emails had the potential to make me overanxious so I made the conscious decision not to let that happen as I felt that could be more damaging than actually getting Covid.
The evidence from the Octave study showed that those on lower doses of methotrexate, do mount a good response to the vaccine, the same as the rest of the general public. I’m on 25mg MTX as well as benepali, prednisolone, hydrocortisone and 2 steroid inhalers, and I tested my antibodies after my second vaccine, and was found to have a strong response. So it’s not a given that you are not producing antibodies. If your concerned you could always check yours. However as long as you’ve had your booster you should be reasonably well topped up. The Octave study were confident that those who do mount a good response and have their booster are not thought to be at risk of serious illness or death, which is reassuring. I too have several lung issues, including asthma, Atelectasis due to having no chest expansion from fused ribs, and lungs scarred from aspirating acid. So despite my good results I will continue to be cautious. I’m fortunate I don’t work now, so am able to do as I feel fit, rather than what the government feel is safe. Hopefully you are able to do the same 🤗
Thank you for your reply. I am still extremely cautious. I don't go anywhere I don't feel comfortable. I don't go in spermarkets, restaurants, theatre, cinema etc and I will definitely continue to stay away from groups of people. For me, the stress of being near people far outweighs the stress of being too close. As long as I can see my family that is all I need. x
I hear what you are saying Sheila, it feels like one confusing mess with the vaccines. xx
I’m doing exactly the same, had started going to the supermarket mid week when it was quiet, before omicron arrived. Now back to ordering online. I’ve found several top restaurants that deliver food to finish at home for that dining out experience occasionally. Stay safe, don’t listen to Boris who is only out to save his entire skin 🤗
I've paid for three antibody tests at Lloyd's chemist over this period. I'm on 20 mg methotrexate. 1000, 400, >2500 and >2500 results. My medics decided anyone on it should get third vaccine and I got a fourth jab (booster) aswell. So I do go out and about more now. I think I'm probably as protected as many others. It takes a deep breath for me to go into restaurants and I go into shops with a good mask on and I've booked to go to Crete in May.i was very frightened for along time but the antibody tests have given me the reassurance to face some of my anxiety. Maybe it would help you to get a test.? Just a thought.
I do think you should ask your GP as I don’t think any of us can answer your question. Your GP will know more about you and your underlying conditions too which may affect the decision on whether you need another jab or not.
Why don’t you write a letter to your GP asking that question if you don’t want to take up their time with an appointment? I found that doing that when it was hard to access my GP was very successful.
Despite being on biologics and MTX, I never was on the CEV list. When the issue of the 4th. vaccine came up, I contacted the head pharmacist at the local commissioning group bey email who replied that I should have it and to contact my GP. So, contacted my GP who agreed that I needed it on the basis of the biologic. He said that MTX did not count, only biologics. Now, I have a letter from him to take confirming that I need a 4th. vaccine. So, that suggests that you would not be considered as needing a 4th. on the basis of MTX. Best to contact GP by email to ask the question.
Yes. I think you are right but at the start they only mentioned mtx and rituximab as being the most problematic with the vaccine. I'll see what GP says although I don't hold out much hope of him knowing any more about immunosuppressed to be honest. I don't say that in a derrogatory way. He is lovely. I just think they don't know. Thank you for your reply.
I think you should contact your GP or rheumatology department, Sheila, but I hope you have more luck than me.
I've been phoning/emailing various people for weeks now trying to find out if I'm eligible for a fourth jab even though I'm only on 12.5mg methotrexate, but nobody here knows or is interested in finding out for me.
Somebody at the vaccine centre suggested that I could take my methotrexate packet to the walk in centre and leave the decision up to the clinician in charge on the day, but I'm sure that wouldn't work, and I'm sure that the BRS advised that anybody on methotrexate should have a fourth jab at one stage.
I left yet another message on the rheumatology department's secretary's answer machine last week, but there's been no response, so I might try them again shortly.
Hope you have more luck than me.
I know. Not long ago the Govt decided that everybody who was immunosuppressed should have a third vaccine. That is what the person on tv said. I couldn't tell you who it was but apparently that wasn't right. They need to be more specific. Thank you. I am emailing my GP this afternoon.
Good luck!
I tried phoning my rheumatology department again this morning, but the phone just rang and rang and I had to give up after quarter of an hour. Their answering machine wasn't even on.
I've emailed my GP, but they didn't know anything, and I can't find an email address for my rheumatology department so I'm stuck now unless I maybe try a letter.
Please let us all know if you find out anything helpful!
Thank you. I am not holding my breath but I will certainly let you know if I hear anything. x
Thanks!
You have to take the bull by the horns these days .I waited 6 months for my 3rd Primary vaccine because I’d had such bad side effects to the first two Covid19 vaccinations.I ‘d had the AZ vaccine for the first two injections,& my rheumy advised me not to have that again.
I telephoned my local hospital where they hold vaccination clinics..,found out the next date for vaccinations & went along with the letter from my rheumy recommending I should have the third Primary, followed in due course by a 4th booster.
I went to the hospital on the day they were vaccinating,, spoke to the person policing the queue & asked to speak to the clinician in charge ….he came out he read my letter …called a nurse over and said this lady needs blah blah blah I went back to the queue …..where surprisingly somebody had saved my place and I got my third vaccination …Pfizer this time… no side-effects at all not even a sore arm.
I find if you walk into somewhere looking as if you know what you’re talking about ….you usually get what you want.
That's interesting to know, but I haven't been able to get a letter from my rheumy because they won't respond to me.
Think I'm going to try writing my consultant an old fashioned letter now, although he'll probably ignore that too.
Just want to know if I'm eligible for a fourth jab and the PCR test/treatment and somebody somewhere must know.
Glad to hear you got sorted though.
Honestly…don’t bother writing to your Consultant …you are right …Consultants are not required to advise on Covid vaccinations.
Why don’t you find out where the next vaccination session in your area is…
Write down :Your Name:
DOB:
NHS number:
Your disease:
The medication(s)you are on :
Date & make of vaccinations you have already had ,.,. with the little receipts they gave you.
Ask to speak to the person who is in charge….& if you are eligible that person will sort things for you.
If you are not they will advise you what you need to do.
You shouldn’t have to do this, but if you do ..you will know once & for all where you stand.
Hope you get things sorted.
Thanks for advice. I might do that. x
Thanks for the advice.
I might end up doing that, but I'm not convinced that the clinician at a walk-in site would know if I'm eligible, and I don't want to waste a dose that somebody else could have if it's not really necessary.
I doubt you would be given a fourth vaccine only on 12.5 mg mtx so I wouldn’t waste any more of your time. I’m on the same dose and a biologic and I’ve not been called to get one. People on just a low dose of mtx have been shown to mount a good response to the vaccine. If you’re really worried maybe get an antibody test to reassure you?
Yes, I've considered getting an antibody test, but nobody seems to know for sure what the results really mean.
You're probably right when you say I shouldn't waste any more of my time trying to find out if I'm eligible for another dose though. It's proving to be so stressful and time consuming and hopefully I have had a good response to the vaccine.
>2500 is a good response. It reassured me.
Are you on a low dose of methotrexate then, Ginny?
20 mg methotrexate, nothing else. BRS catch all guidance followed by Rheumatologist.
OK. That's good that your rheumatologist advised you. Still no word from mine.
Remember the people running these clinics are clinically qualified.The person running the clinic will have to have enough knowledge to know who qualifies…..as well as provide resuscitation if necessary….if one patient keels over with anaphylactic shock….there has to be somebody to deal with it there & then…there is no time to run down the corridor for help.
Just get all the information clearly typed out….& find out for sure ,….then you can relax.
Thanks again for the advice.
I might do this, although Kitty J has just said I won't be eligible for a fourth dose, so maybe I should give up trying to get one now, and hope for the best.
Do whatever makes you feel comfortable…I only went for the third Primary because I was a bit spooked by Omicron & there was very little credible info available on it back in November. If anything makes you think you really might need to get the jab …sort it out then.
I've got a couple of weeks to decide what to do, but I must admit I'm even more confused after reading about different people's experiences here. Also even more worried now people have stopped wearing masks. Just wish my rheumatologist would respond.
I agree. I was the same as you, ill for 5 days after first two AZ and no problems with the Pfizer.
I reckoned the person running the clinics would know who was eligible….& I got the vaccination.If I had been told I wasn’t eligible..I would have said OK thanks …& carried on exactly as I do now…with caution.
I reckon life is too short to stress over how many jabs I get…unless I knew how well I had responded to the previous vaccines …..it would be pointless to worry about getting another one!
I had my forth vax/booster on Sunday at a walk-in clinic, I went on the Gov website, but you are unable to book, just says to go along, so long as they say they are doing the 4th vax. I had rung my rheumy nurse for a letter, she rang back and said I only need to show a letter with my meds on, in my case Humira, Mtx and steroids. I tried to go to my GP run centre, but there wasn’t any availability and they didn’t know when there would be. I had also checked with my GP and he said I was eligible for a 4th/ booster. I must add the army were there doing the vaccine’s, they all seemed clued up on the 4th, I was asked what was wrong with me and what immune suppressant I was on, so I didn’t really need any paperwork, I did show him the Humira box though. The man behind me wasn’t on any meds, but he had prostrate cancer a year ago and he got the jab. Good luck, but check with your rheumy team or GP. X
I will. Thank you. I don't think I would be eligible but you definitely are. I'm glad you got it.
I too went to a walk-in , organised by the army and they were brilliant . I'd had 2 x AZ and a booster when my rheumatologist decided that I could have a 3rd vaccine . So I went to the army run walkin armed with documentation on past covid jabs and rheumatologist letter . I explained my case to the army medic and offered to show my paperwork but he said it wasn't necessary to see anything as they could verify everything on my online medical portal . It seemed to me that everyone was so pleased to see you and to get as many people vaccinated as possible, that they gave the impression you were doing them a favour by turning up .
My rheumatologist wasn’t at all interested. He said have you had covid? You’re probably fine and the vaccinations will give you good protection. I’m on 15mg Mxt only now and I’m not too worried. I’ve never shielded and I feel even if I did get it , I would be ok. The Omicron variant which is the predominant one now does not affect the lungs . Fingers crossed there isn’t a new worse on the way!
Wow, that’s irresponsible of your GP. Omicron is still Covid 19 which is a SARS virus. If affects the respiratory system, your lungs.
I received a letter from my Dr to ask me to go to a walk in covid clinic to receive my 4th vaccine. I'm going next Sunday.
See attached link which tells you what to do if you think you are eligible for a fourth jab but do not have a letter from your GP/Consultant specifically inviting you for the fourth jab.
nhs.uk/conditions/coronavir...
Under Book Online click on If you do not have a letter.
I went to my local walk-in centre yesterday without a specific letter and got my fourth jab. I took the general letter sent out from the NHS in September/October saying that I may be eligible for the third jab, plus a recent letter from my rheumatologist following a consultation and copies of my blood tests to show my immunosuppression.
My letters came from the health board as I'm on biologic medication and I had 3 doses and was told to have my booster in 6 months but I was called for it in 3 months. Chase it up x
Thanks.
I am in a similar situation Sheila_G, inject 17.5mg MTX but received all the CEV letters from various Gov departments and local councils etc. My white blood count dropped right at the start of the first lockdown which got me on the CEV list and I do have a history of severe infections requiring hospital treatment.
Rheumatology Nurse messaged to say I would be receiving a letter but none materialised. GP Receptionist asked ? (don't know who) but they refused to print me off a letter from the Green Book so my 3rd was recorded as a booster and not a 3rd primary dose. Rheumatology have failed to respond to message on My Chart and when I emailed (on Consultant's letter) all they did was refer back to the nurses who don't respond!
I contacted our Clinical Commissioning Group who said if all else failed the GP should have produced the letter. However, I'm now 3 weeks in waiting to be called by the Vaccine Data Resolution Service (VRDS) to hopefully hear that they've changed the computer to 3rd primary to enable to book a booster (4th dose) which is due next week.
It's been a mess, but it's the people who don't access RA info online but should have a 4th dose that concern me, who is looking after them?
I asked at GP surgery last week and was told they can't do anything about this and to contact Rheumatology.I have previously asked rheumatology,back in Oct, and was told they were just getting letters out to those on biologics.
I'm on 20mg mtx ( over 20 is the definitive for 3rd to be primary) and also have asthma (125 mg seretide, which is a high one) and am over 70. The original guidelines for 3rd as primary didn't seem to include comorbidities.
Now all restrictions are off or going, I'm blooming scared!
I know. I am worried about the number of people who won't be wearing masks from today. Too much, too soon.
It definitely is. Rates are higher than national round where I live but that won't make a lot if difference. Before Covid I was a sociable outgoing person, and after 2 years of being super careful I feel like a sad hermit . The awful thing us, this may be my life (and same for a lot of us here)from now on 😪
I feel the same. I have just recently been a little more confident about going out but have still not been in supermarkets or restaurants and now I don't want to go anywhere again. I hate being so negative but there are still over 100,000 people being diagnosed every single day. How can this be a good reason for lifting all restrictions. It is like playing Russian roulette and it isn't fun. All the best to you.
In all honesty I don’t know whether I will get a 4th jab or not. I thought I would wait until my next rheummy appointment and take it from there. Best of luck to you 🌟
And to you. Thank you.
Morning well I’d call as I have had letters re 4th dose and pcr = anti viral. I’m on 17.5 methotrexate 6x sulfasalazine .. it’s crazy how it differs so much around the country ! Mine all came from our local health authority x good luck 🤞 x
Thank you. Glad you got yours.
I had two vaccines and a booster and have been asked to have the 4th by a letter but no one contacted me about that yet. I feel i had enough vaccines . i am on the same boat as you are Shiela. Wondering whether I should contact my GP 's practice but they are too busy
Sadly, I think we are on our own. This is a unique situation. No-one can give us any definitive advice. I think the fact that the medical profession doesn't know anything about us and our situation is even more scary than the virus itself. We have no-one else to turn too.
I think it's all very scary too, Sheila, and I've just emailed my local PALS to see if they can get in touch with my rheumatologist for me as he's ignoring me and I can't find out if I'm eligible for a fourth jab.
Thought it was worth a go.
I decided to email my GP but they don't have an email address so I might write a letter instead.
I hope you can get an answer from your GP, Sheila.
I emailed mine and somebody phoned me a week later to say they weren't sure if I was eligible for a fourth dose of the vaccine or not, which wasn't very helpful.
Thank you. I will be speaking to my GP next week about another problem so will ask him. It saves me writing a letter and he is very easy to talk to.
Well, I hope he knows the answer to your question. I really do.
Good afternoon- Covid Boosters
Hi I'm in Scotland I'm immune suppressed when I went for my booster they told me it's a primary I'm getting and I will get booster few months ,I have not received a letter of a thing from my rheumo therefore I phoned the helpline and booked my booster myself which I go for Saturday ,it seems to be a shambles up here also i have no letter just a number and I will take it over so fingers x 🙏 who knows but I think it you can phone the help line and they will tell you ,hope you get sorted 👍
Hi If your 3rd vaccine was classed as a 3rd primary vaccine n its been 91 days since you had that you are now entitled to your what is now your booster, I am on 50mg benapali weekly and have RA, I had no letter or anything from Rheumatologist so I rang my local vaccine centre booked myself in and just double checked ok to do so with RA nurse, she said yes go ahead n I went had it done.
All I was told was to take any proof of being immune suppressed which I did but they didnt even ask for it so I'd just do what I've done n go for it. Xx
I'm on 15mg Methotrexate & Hydroxychloroquine. I had my 4th (booster) yesterday. Received a text and letter advising of appointment. I'm in Cardiff & the Vale Health Trust.
Interestibg.
If your hospital has a rheumatology helpline why not ring and leave a message querying whether you should have a 4th dose? That's what I did and 2 days later got a phone call back saying yes, and 2 days later a letter in the post. I had my 4th dose at the weekend and feel much safer as a result. The whole process took less than a week and if I don't get Covid, or only a mild version not requiring medication or hospitalisation as a result that will be an overall win for the NHS as well as for me. What's to lose from picking up the phone?
thank you
In Australia those of us who are immunocompromised have had three doses as part of our primary dose amd can get a booster (4th shot) four months after that last one.
thank you
I have RA, when I had my 3rd Jab, i was asked about my medical condition and was told i would be getting a 4th Jab. Luckily enough my GP were on the ball and contacyed me to have a Booster. If you are concerned that you have been forgotton then I would contact your GP.
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