Went for booster, ‘upgraded’ to 3rd primary - NRAS

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Went for booster, ‘upgraded’ to 3rd primary

fangrock profile image
47 Replies

Yesterday I went for my booster. My rheumatology nurse said I didn’t need a 3rd primary because I’m on 20mg Methotrexate and not considered severely immune suppressed.

When I got there though, the nurse fetched a doctor who said the guidance had been updated and I did need a 3rd to be followed by a booster, so I was moved from Moderna to Pfizer. And I’ll need the booster in three months

It’s all very confusing. Has anyone else experienced this?

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fangrock profile image
fangrock
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47 Replies
MadBunny profile image
MadBunny

It's been so confusing- advice has varied so much. My experience has been the opposite - I needed a 3rd primary as I'm on a biologic , but was given a booster( Pfizer). According to my nurse, guidelines have been recently updated and all has been sorted out for me. I posted about it yesterday.

AgedCrone profile image
AgedCrone in reply to MadBunny

The injection is the same……when the system is updated.,,all our records will show that those of us who needed 4 jabs, had three Primary vaccinations and a booster. Mind you …..when that will be who knows?

bpeal1 profile image
bpeal1 in reply to AgedCrone

Unless they use Moderna. Moderna 3rd dose should be a full dose and the booster a half dose. Phizer is identical for both.

AgedCrone profile image
AgedCrone in reply to bpeal1

Only because they are different strengths…the effect is the same strength.

fangrock profile image
fangrock in reply to AgedCrone

The booster where I am is a half dose of Moderna, third primary is a full dose of Pfizer - that's what they told me yesterday.

AgedCrone profile image
AgedCrone in reply to fangrock

That right…because Moderna is stronger..But let’s not get into a long drawn out weekend discussion….as long as we all get the vaccinations we need…let’s start the new year with optimism & just be thankful we live somewhere we can get them as easily as we do.

Some poor people in Africa & Asia will probably never get any vaccines.

sylvi profile image
sylvi

Now my surgery has said i don't need a fourth jab as well. xxx

Oshgosh profile image
Oshgosh

I was ring by the surgery to. Go for. Vaccine. When. I got there. I was told that it was my fourth booster. I don’t want to sound flippant, but this has gone on for so long IVe given up trying to make sense of it. In CVE and immunosupressed.

AgedCrone profile image
AgedCrone in reply to Oshgosh

Yep….as long as we wake up healthy every morning…let’s not worry what the jab we get is called! 🥱

Gnarli profile image
Gnarli

Thank you for posting this as I'm exactly the same but been told nothing. I seem to be stuck between 'absolutely nothing wrong' and vulnerable. On 20mg MTX like yourself I feel abandoned and not in a good way. I suppose all will be revealed at some point. What a mess

fangrock profile image
fangrock in reply to Gnarli

It is a bit of a mess. I've stopped MTX for two weeks with the aim of having the jab in the middle. The vax centre had a big thick book of guidance and they seemed to know more than my rheumy nurse. Maybe just book something, turn up and let them decide. They didn't ask for any doctor letter or proof.

nomoreheels profile image
nomoreheels

I have. I'm on 17.5mg MTX (injections) plus long term long term low dose steroids. My GP Practice has arranged all my vaccine appointments & for the one following my second they said it would be a booster. It was the nurse who was injecting me said that was incorrect, it's my third primary, so that is what she put on my card. This was last September & I’ve since had my booster, on 20th December. Mine was also the Pfizer, the previous one also but the first two were AstraZeneca.

lucymead profile image
lucymead in reply to nomoreheels

Hi Just a change of topic. I have been on Orencia injections for30 weeks it works for me. I had to have a break of ten weeks and I am feeling great. I wonder what your thoughts are? I don't want to go back injections while I feel so well. RA nurse says I have to because I am seropositive . My bloods are great and I can do lots of things I could not do before.

nomoreheels profile image
nomoreheels in reply to lucymead

Hiya Lucy. Sorry for delay in answering, had a busy Sunday & been at a funeral this morning. I'm really pleased about how you are just now & I don't wish to be a harbinger of doom but happy times may be on the limited side.

I think to answer the question it may be helpful by asking your thoughts. I don't know what other meds you're taking for example, which of them may be contributing in keeping things bubbling under. Or is it, coincidentally, that it is at around 10 weeks that abatacept completely leaves the body. This of course is an approximation as it's person dependent, for some it may take a longer or shorter time as elimination rates can differ from person to person but it's going to be round then.

I can understand your reticence in going back on abatacept when you feel so well & are able to do more but your nurse has a point, best not to dismiss her out of hand. Seropositive diagnosis rarely goes away, especially if you're dual seropositive. It can become less aggressive over time, & once well managed, that is perhaps more apparent if when diagnosed it was aggressive. It could be that you've been well controlled for a long enough time, or in remission, that you're experiencing it being on the wane. Obviously the ideal would be that your RD can be controlled on as few meds as you can manage, but keep in mind it might come back to bite you on the bum, don't lose sight of that.

Not sure how helpful I've been but it's a waiting (& guessing!) game really. 😏

lucymead profile image
lucymead in reply to nomoreheels

Thanks for reply. I don't know how to find out if I am dual seropositive. I was diagnosed after an accident and my hands and feet where very swollen and inflamed. I had extreme pain an fever. That was 7years ago now. Been on many meds and most dmards as well as MTX, Benapali , and now Abatacept. I inject this and do not take anything else with it. generally I do have to take Budenofalk 12 weeks at a time for Cologenouse collitis. I have been off that for 5 weeks now.. I have not lost sight and am used to being bitten on the Bum by Colitis. 😀 Your wise words are noted and I will restart Abatacept.

Downtime profile image
Downtime

I thought the guidelines were that people taking 20mg Mxt or more would have a third dose then a booster later, which seems to be the case for you. I’m on 15mg and I was told I’d have a third primary and nothing further at the moment, and thats fine with me.

JammieDodger3 profile image
JammieDodger3 in reply to Downtime

That was my understanding too, but I haven’t read the latest guidelines (if there are any, that is). When the MTX 20mg cut off was announced, I was also on 15mg; I’m now on 20mg and had my booster in Dec (following two previous jabs), so not sure where that leaves me now.

Sheila_G profile image
Sheila_G

I would like to know what the updated guidance is. Does it go below 20mg of mxt. The advice has been sketchy to say the least. I take 17,5mg of mxt and have mild bronchectasis. Can anyone on here tell me if I need a 4th vaccine please? Does the bronchiectasis make a difference? Thank you.

Lolabridge profile image
Lolabridge in reply to Sheila_G

I think it’s probably best if you ask your Rheumy. Or look on the BSR website and see what they advise.

Sheila_G profile image
Sheila_G in reply to Lolabridge

Thanks. I have tried that but it doesn't include my issues. I will try my GP again.

Briefencounter profile image
Briefencounter

I've often wondered why those of us who are CEV and/or on 20mg of methotrexate , or on any other medication that might make us immunosuppressed to some degree , aren't offered an antibody test . Then we would have some idea whether the 3rd vaccine/booster has been effective. Or is that too simple 🤔? I think I read somewhere , possibly on here , that this happens in Greece . My RA has flared quite badly since I had a Pfizer and then 1/2 Moderna after my 2 x AZs . I am extremely grateful that I have been able to have access to these vaccinations but I may not have gone for the 4th if I'd known that the first 3 were sufficient.

Haz58 profile image
Haz58 in reply to Briefencounter

I totally agree with you. Why oh why don’t they just give us all the antibody test then each person would know how the jabs have worked for them. Surely this would be simpler than the farce of not knowing if you actually ‘need’ another shot.

AgedCrone profile image
AgedCrone in reply to Haz58

Think about it…..we don’t have enough doctors, HCA’s, nurses to carry out what they should be doing now……& with many NHS employees now off sick with Covid….the situation won’t improve soon.

Laboratories are working as hard & fast as they can…..& antibody levels change rapidly ….so I’m afraid if you really want this test to set your mind at rest……unless your doctors feel it is necessary……you will have to arrange it yourself privately.

If you look back on here..,quite a few people have had these tests…I’m sure they will tell you where they got them.

Otto11 profile image
Otto11 in reply to Briefencounter

Hi yes it would have been very useful. I was included in a research study for UCL hospital & part of that was an antibody test after first 2 vaccinations. They e mailed to let me know I tested negative & to speak with my GP. He wasn’t interested but Rheumy were & asked for the print out to scan onto my notes. I then caught Covid. So after I recovered I paid privately for an antibody test for peace of mind. I had over 2,500 antibodies. It was so reassuring to know. X

Briefencounter profile image
Briefencounter in reply to Otto11

I've seen other people reporting the above 2,500 antibodies . I'm sure this would reassure most people . Perhaps the "powers that be" will get around to it someday . Would you mind saying what test you used ? I see that there are many on the market now and it would be useful to get some guidance. Ignore this request if you'd rather not .

Otto11 profile image
Otto11 in reply to Briefencounter

Hi Yes I used York Test. It was about £40 I've also just done another blood test for antibodies with UCL again but wont get the results for about 8 weeks they said. All part of a study I took part in.

Briefencounter profile image
Briefencounter in reply to Otto11

Thanks 😊!

Haz58 profile image
Haz58 in reply to Otto11

I do antibody tests once a month for Virus Watch but they just say yes you have them or no you don’t. It’s good that yours tells you what level you have.

Otto11 profile image
Otto11 in reply to Haz58

I guess but expensive though c

Cavlover profile image
Cavlover in reply to Otto11

I sent off a sample to UCL at the beginning of December and have heard nothing. Tried emailing but no reply. Would be useful to know as borderline too.

Otto11 profile image
Otto11 in reply to Cavlover

My paperwork said it would be about 8 weeks for the results. x

Cavlover profile image
Cavlover in reply to Otto11

Thank you. Don't recall it saying that on mine but sill wait and see. With Christmas and the surge in cases I presume it found be even longer now.

Otto11 profile image
Otto11 in reply to Cavlover

Is it the Covidence Study? I will see if I still have the paperwork.x

Cavlover profile image
Cavlover in reply to Otto11

Virus Watch? Not sure if it is the same thing?

Haz58 profile image
Haz58 in reply to Cavlover

Virus Watch just says yes you have antibodies or not. Would be good if they gave the number of them though, I do the virus watch ones too.

Otto11 profile image
Otto11 in reply to Cavlover

Don’t know 🤷🏻‍♀️ X

lucymead profile image
lucymead

Yes I most certainly have. I was told by GP Nurse it would be a booster. When I got to Vaccine site I was sent to Moderna side. I told nurse I could not have it as I had problems with that type of Vaccine. She went to speak to on duty DR. who asked about RA and meds and changed vaccine to PFIZER 3rd primary and said next one in 3 months. That was November 18th.

fangrock profile image
fangrock in reply to lucymead

Exactly my experience

Tourk profile image
Tourk

money its all about money. the doctor gets it for moving you onto Pfizer, Pfizer gets it for telling you, you need a booster every three months. each shot costs less than a £1 every time someone gets a shot they get over £21. all this for a mild flu [tpe virus] that is easily and effectively treated with vitamin D.

this is why you are confused. nothing adds up unless you release money/ profit

is the driving force.

I wouldn't tell anyone not to have the vaccine that is up to you, but covid will last for as long as people are willing to accept a vaccine.

having had covid I can say how effective vitamin D is. I do take zinc as well as vitamin C , I have not had any of the vaccines as none of it made sense. what we were being told didn't follow independent expert advice.

lucymead profile image
lucymead in reply to Tourk

I am really pleased that everyone does NOT think like you. There is no clinical evidence to prove your comments on Vitamins.

Tourk profile image
Tourk in reply to lucymead

Sorry but you are wrong there is plenty of clinical evidence to back up everything I've said . Just not in the main stream media .The ugov UK website has quite a lot but does take quite a lot of surtching.

If you are interested I can share links also medical journals from around the world.

Haz58 profile image
Haz58 in reply to Tourk

Gosh this is one amazing worldwide scam then…in your opinion. My sister has to take vitamin D etc she got COVID in October and really suffered with it, and so have a lot of other people I know. And a year on some are still suffering with their breathing. Everybody is different in how illnesses affect them.

Tourk profile image
Tourk in reply to Haz58

Interesting how much vitamin D is she taking? When my step daughter brought covid home from school I doubled up on my prescribed dose. Most people don't take anywhere near enough. When the extra clicked in one day I was ill the next I not only felt better but better than I have for years.As for the world wide scam. Covid 19 was painted in America 2014 by the rothschilds the same people behind Pfizer. So who knows best to do your own research.

If nothing else it helps pass the time when your stuck at home.

More than anything looking after yourself helps fight all sorts of bugs. Vaccinated or not we should be taking a quality vitamin D. If you have tried it it's like rocket fuel really goes one a boost.

AgedCrone profile image
AgedCrone in reply to Tourk

Ah…the old old “they” are making money theory!

You may think you are right…but millions of people around the world are alive today because of vaccines…you only have to see on TV people today recovering from Covid 19 ….freely admitting they were very wrong to refuse to be vaccinated.I remember losing school friends to TB & Polio….now vaccines have eradicated both those diseases.

Only fairly recently Smallpox has been eradicated in most countries & within the last year…Malaria has been controlled….if not completely banished. Think kf the number of lives that will save.

These examples aren’t in my imagination… like your suggestions…….they are fact.

So please do carry on taking VitD…it has been proved beneficial for general health…….but if you thought it through….all of us who have taken VitD for many years would never have caught Covid….and sadly that is not the case.

After intensive tests last year that fact was proven…So you need take good care only relying on vitamins. ….that ICU bed may not be available….. if you need it.

Tourk profile image
Tourk in reply to AgedCrone

Not a theory but fack. The people you see on the tv have not taken any action to protect themselves. 83% of people who have been very ill or sadly died from covid had low levels of it in their blood. 6 out of ten which died had other healthy issues.The vaccine is only a preventative that has no effect on transmission. According to independant experts.

This is why I say vaccinated or not you should be taking a quality vitamin D and looking after yourself body and mind to stand the best chance of not being to ill from covid.

Myself and my partner not vaccinated had fairly mild symptoms. The children nothing but a slight cough.

Please note I am very much in favour of vaccines. Just not this one

soundsofborder profile image
soundsofborder

I had my third primary in Sept and 12 weeks later I’ve had my booster. So I’m guessing I’m fully vaccinated now. I think I’ve been very lucky that my GP and the health team dealing with vaccinations where I live, have been aon the ball. Ive also had notification from my Rheumy team to check on the fourth dose, but I’d already had it. Hope everyone stays well xx

Hamie profile image
Hamie

I had my 4th or booster dose in n Friday, The nurse at vaccine centre had advised me in October (when I went for what I thought would be my booster) as on 20 mg MXT I needed 3 primary and then booster . I was a practice nurse at the time and since retired and we as a practice as usual hadn't be told... always last to know.,. guidelines change fast and communication often poor between different departments!I received text from Scottish test and protect before Xmas advising me make appointment.

I'm happy to have had it now . The vaccine centres are up to date on what we need it's a shame the guidelines are not appearing to be the same everywhere.

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