Third vaccine as on Methatrexate: Anyone had third or... - NRAS

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Third vaccine as on Methatrexate

trace58 profile image

Anyone had third or even getting any hope of there vaccine as Imunesurpressed JCVI recommends over 20mg per week Methatrexate etc and other meds listed any GPS out there even knowing anything about it or where we go for it!!?

46 Replies

Don’t get me started!!! Just posted my experience to post above yours.

Neonkittie17 profile image
Neonkittie17 in reply to GinnyE

😑😢

Hopefully you hear soon they started on 1st september for cev

And for vulnerable and over 50s booster started yesterday

Vulnerable and over 50s must wait 6 months since last jab

Just got a text from NHS advising me I’m due to get my “booster” at least 26 weeks after my second jab and that my surgery will contact me to book.

My rheumatology dept posted on their Facebook page that they don't know when the 3rd primary doses will be rolled out (although I think some people in other parts of the country have already received them), but they anticipate that GPs will contact people who are eligible. In other words, they haven't a clue🙄

GinnyE profile image
GinnyE in reply to Ascidian

Yep

Oh dear….yet again seems so confusing in the UK!

Be glad you’re not here ......

Denise64 profile image
Denise64 in reply to helixhelix

Your not wrong there. My doctors dont know a thing about it. My RA team have information but not when and where it will be. X

Lolabridge profile image
Lolabridge in reply to Denise64

It’s a major problem for those of us on strongly immune suppressant meds. The Green Book advises GPs to wait for information from Rheumatology consultants as to the best timing for patient to mount a good immune response (vital for those of us on Rituximab). My Rheumy team tell me they are awaiting advice from the BSR. Catch 22??!

I had no luck with GPs. They just said they hadn’t got the relevant information yet despite me sending it to them. I contacted my rheumatology department earlier this week and they arranged for me to have my third dose at the hospital hub today. The doctor at the vaccination clinic said that most GPs hadn’t sorted 3rd doses yet and the best thing to do was contact the rheumatology department. He said that’s what he’d also had to do to get his third dose (he’s taking anti-TNFs).

Moleymum profile image
Moleymum in reply to bpeal1

Gp’s once again given impossible job of searching for severely immune suppressed patients based on very complex criteria. To create searches based on this criteria is beyond our expertise. We have been told searches are coming out at the end of the month but by the way these patients need to have had their 3rd dose by 17th……..of September!!! Oh ok! Hospital Consultants are the ones who would know about these patients- they should have tasked them with the 3rd doses but oh no as with everything- it’s the default - put it onto the GP! I’ve had my booster as a healthcare worker on Thursday. Felt rough yesterday with a sore arm and banging headache. If you know you fit the criteria I would make yourself known to your GP and maybe just try walking in at a vaccine centre. I don’t think you can book via national booking service as they are not set up to book 3rd doses.

bpeal1 profile image
bpeal1 in reply to Moleymum

I totally appreciate it would be hard for GPs to search for patients - but according to other posts some have managed it. My point was that I did make myself known to the GP. I sent them the relevant section of the Green book which spelled out that immunosuppressed were entitled to a third dose. They clearly agreed that I am immunosuppressed because in the same message I also asked them to arrange vaccination for my son who’s just turned 12 because he is a household contact of me which they did. To just say they know nothing about it when I have told them which page and paragraph of the green book to read is frustrating.

dippyd09 profile image
dippyd09 in reply to bpeal1

I have contacted both my GP and rheumy team but no one seems to know what’s happening. Doesn’t really inspire confidence especially when I am getting more anxious about going out where everyone else is back to normal!

Moleymum profile image
Moleymum in reply to bpeal1

they have probably done what we have had to do - rely on either patients making themselves known to us or the Gp has looked at the criteria and thought of some patients who may fit the criteria. No searches have been published nationally so any searches practices have created themselves would have been imperfect at best but with the Nhs pressuring practices to get it done by the 17th - that is all we can do. Also literally the info came out on Tuesday I think giving us 3-days notice. It’s no wonder some GPS don’t know anything about it. If the practice manager was on leave then they would be the one getting this information.

GinnyE profile image
GinnyE in reply to bpeal1

My hospital don’t want to know. Said it’s down to my GP who won’t act on third primary advice

I live in Jersey and we have just been told about our next vaccine programme. I’m on 15mg Mxt so I don’t qualify as CV it seems and we have been told that everyone will have their booster 6 months after their second vaccine date. So people who vaccinated late might be waiting until next year.

Hi, I got a letter from Rheumatology this week telling me I should have the 3rd jab (25mg Methotrexate) and it was copied to my GP asking them to prioritise this. However I'm not holding my breath!!

Moleymum profile image
Moleymum in reply to Dobcross1

I would encourage you to take that letter with you to any vaccine centre and they should give you the vaccine.

Wigelia profile image
Wigelia in reply to Dobcross1

Same here. Are you also in the Oldham area? (Dobcross would suggest that you are.)

Dobcross1 profile image
Dobcross1 in reply to Wigelia

Yes!

I'm having my 3rd vaccine today (Saturday). 15mg Methotrexate & JAKs. I'm a bit apprehensive because I'm only just coming up to 5 months! When I spoke to someone on the phone she said, its the 3rd jab NOT the booster and so long as its 8 weeks since last jab, that's ok. Wish I had phoned Rheumatology dept yesterday now. I'm in Wales by the way.

trace58 profile image
trace58 in reply to DebraJH

Who contacted you about the third jab

DebraJH profile image
DebraJH in reply to trace58

Hi trace58. It was the Health Board.

I’m going mad about this. I’m a teacher in a hugely busy secondary school. One of my colleagues has crohns but is on one immune suppressant to my three 😬. She’s under the same hospital trust and even under the same gastro department! (Imperial and st Mary’s in london) she got a text from them and has her vaccine booked for Tuesday. Me nothing. My other teacher friend in the same school who has leukaemia (different hospital but Iives in same borough) has also heard nothing. Ive called everybody I can think of. I’m virtually stopping strangers on the streets! My rheumatologist (I called his secretary) alleges he knows nothing about it!! I’m sorry for the rant but i woke up angry then saw this post!

bpeal1 profile image
bpeal1 in reply to Bon1

Are you able to email your Rheumatologist’s secretary? If so try sending a copy of this letter. england.nhs.uk/coronavirus/...

Bon1 profile image
Bon1 in reply to bpeal1

Thank you! Back to the fight Monday…definitely going to try this.

bpeal1 profile image
bpeal1 in reply to Bon1

Apologies that’s the wrong link above. This is the correct one. england.nhs.uk/coronavirus/...

trace58 profile image
trace58 in reply to bpeal1

When n where from did you get this letter

bpeal1 profile image
bpeal1 in reply to trace58

All letters are published on the england.nhs.uk website, with a bit of Googling they are quite easy to find.

GinnyE profile image
GinnyE in reply to Bon1

It’s so wrong. I’ve posted a lot about this. I feel your anger and frustration. I’ve offered to give my GP the letter from NHS someone posted here and she said she hadn’t time to read it. To know you should have a medical intervention and then realise your medics won’t do it, for whatever reason, is staggering.

Moleymum profile image
Moleymum in reply to Bon1

A lot of vaccine centres are taking walk ins. They may be willing to check your eligibility and give it to you there and then.

I had a text from my local health board asking me to phone to book my third vaccine. I'm in south wales. I'm having it today.

Well I received my flu jab yesterday and I asked the nurse if I would be getting at same time and she said that they had no information or any being sent as of yet. So guess it’s waiting game.

Moleymum profile image
Moleymum in reply to Nuttyshirlz

We only got the green light to co-administer flu and covid on Thursday last week so some may not have caught up with this info.

Nuttyshirlz profile image
Nuttyshirlz in reply to Moleymum

Yes I know but only but really we don’t want it to early or it won’t cover us over the winter months

I had the second dose back in Early April and was told I would be prioritised. A few weeks later I tested zero for antibodies. But every Doctor and Nurse I have seen since don’t want to to know and give no answers why. On MTX and Prednisone

HiI contacted my GP as I had letter from dept of health with jcvi guidelines re third primary vaccine and booster six months later. I had been pestering my MP which is why I got the letter otherwise I wouldn't have had a clue. My GP knew nothing about it so I then contacted my local CCG who are much more clued up. As I understand it They are waiting for formal notification of the legal framework which will enable them to give the vaccination. They expect it on 21 Sept. After that someone I'm not sure who will filter those that qualify and whoever is doing the vaccinations in your area should contact you. Of course we have to rely on it all working smoothly. Initially the third vaccine will be registered as a booster until the IT is sorted out but you should also be called for a booster six months later. TBH it might be worth you contacting your local CCG as they might all be a bit different.

Bon1 profile image
Bon1 in reply to grumpygirl

Thanks for this. Very interesting and helpful.

Cavlover profile image
Cavlover in reply to grumpygirl

Whereabouts are you as nothing going on here in Somerset. Flu jabs delayed due to supply issues as well.

grumpygirl profile image
grumpygirl in reply to Cavlover

Lincolnshire. I wld really recommend getting in touch with your local clinical commissioning groupThey will have a website and an email address. They will be able to tell you what's happening. Or get in touch with your MP, whatever their political colours they are there to help you. I think as a group we are being treated poorly with no good communication going on but things will only improve if we remind people we are here

Cavlover profile image
Cavlover in reply to grumpygirl

Thank you. Will have a look at the CCG website as you suggest.

GinnyE profile image
GinnyE in reply to grumpygirl

Thanks for this. I’ll try my local ccg.

After reading the posts I'm so glad I went for taking vitamin and having covid instead. To much effort into getting jabbed now boosters, then boosters for the boosters for the boosters.I have enough trouble getting to the bathroom let alone the doctors every few months for a top up .

My daughter gets married next Saturday with 70 guests. I’ve been trying desperately to get my3rd vaccine. Mentioned it to GP who phoned back the next day to say they weren’t involved and to phone specialist and 119. They both say it’s the GP. Emailed MP who said they haven’t announced it yet, and had to explain this is separate to the boosters, so she says get back to GP. I’ve emailed the CCG whose newsletter brags about how quickly after announcing boosters they were starting on the 13th, yet 3rd dose announced on 2nd and nothing is sorted.

I’m on 5 different immunosuppressants not including my steroid inhaler and nasal inhaler. I meet the eligibility criteria and it’s all on my repeat as well as biologic recorded. The NHSE guidance says that specialists should look at who qualifies, but parallel to this if Gp knows you meet the criteria they should book it ASAP. I’ve given up as it’s to close to the wedding so the dose wouldn’t have an effect yet, and last time I had side effects and flare for 4 days

Im on 25mg mtx and benepali as well as prednisolone and hydrocortisone. Also another immunosuppressant for my asthma + steroid inhalers

GinnyE profile image
GinnyE in reply to Maureengibson

It’s a shambles.

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