Best protocols in taking the COVID vaccine? - NRAS

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Best protocols in taking the COVID vaccine?

HanaleiBa profile image
37 Replies

Hi all, have your rheumies provided advice on how best protocols in having the vaccine? What I mean is with the Shringrix/shingles vaccine my own rheumie instructed me to take a prednisone round for the second dose to save me from the bad side effects and avoid a flare-up. 7 of her 10 patients had excessively bad reactions. Also with the flu shot you avoid MTX, etc. Patient groups and the NHS aren’t publishing protocols, but I’m now being put on the extremely clinically vulnerable list so may get this sooner than I’d planned (I thought to wait to out a couple months as we learn best practices here). As with Shingrix the answer ultimately came from my individual Stanford University (amazing) rheumie on her own testing of her patients. I’m wondering if any of you have heard from yours?

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HanaleiBa
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37 Replies
MadBunny profile image
MadBunny

Not yet apart from telling me not to have one without discussing it with them first.Im on mtx and biologic( Cimzia) and the nurse said it's likely that I will have to stop mtx but not Cimzia .

HanaleiBa profile image
HanaleiBa in reply to MadBunny

Thanks! Let me know what you keep hearing. Studies show 2 weeks no MTX post injection is the best compromise without sacrificing disease control. I’m on Actemra and like with Cimzea, the biologics that don’t impact B cells are generally ok to continue. But with MTX I guess we’ll be guinea pigs. 2 weeks no MTX is Fine for a 1 dose vaccine. Not fine for 2 dose :). I worked too hard to get to remission to give it up....

MadBunny profile image
MadBunny in reply to HanaleiBa

It's a difficult one isn't it. I'm the same as you re remission. Stupidly I forgot to take my mtx last week and by Friday I was really starting to feel it.

HanaleiBa profile image
HanaleiBa in reply to MadBunny

I'm with you - nice to hear from someone in the same boat (though I wouldn't wish it on anyone, of course). Your nurse seems really on top of it. If you get more direction please share. I'm finding in other comments that other rheumies or nurses are not quite as on it. Meaning, providing no advice or advice that you don't need to change anything, when it's pretty clear we do with MTX - every prior vaccine study has shown that. I'm just wondering what they'll suggest for this one. Either way, I'm aware we will be the guinea pigs. I'm ok with that, but I'm not ok being told stay on all meds and do nothing if that results in 40-50% protection (as in other studies when MTX isn't adjusted), when if I waited 6 months for more direction on protocols I can increase it to 70%+. I mean, I'll be wearing a mask either way and it's not like my husband who is healthy will get it til late summer at the earliest. So, our lives will be the same until we are both vaccinated. I'd rather wait and do it right.

MadBunny profile image
MadBunny in reply to HanaleiBa

Yes she did tell me no mtx was to improve efficiency of the vaccine. Mine are good on the whole although it can be hard to get hold of the nurses sometimes. I've also got 'co morbidities' ( dreadful phrase isn't it) which puts me a bit higher up the list but asI've waited this long I'm not too bothered.Ill just continue to stay shield as much as possible and not take risks. Take care😊🐰

cpr02 profile image
cpr02

The vaccine is safe to have with ra and on methotrexate I asked before receiving mine no protocols needed x

cpr02 profile image
cpr02 in reply to cpr02

Sorry reading other peoples replies I can see they were told different! Hoping advice I was given was ok ! Xx

HanaleiBa profile image
HanaleiBa in reply to cpr02

All good! It is safe it seems - I fundraise for some researchers working on trials. I'm more curious about modifying my MTX regiment as you need to with the flu shot. But appreciate you responding! ;-)

cpr02 profile image
cpr02 in reply to HanaleiBa

I knew none of this 🤣🤣🤣🙈🙈🙈 have had both flu vac and covid one whilst taking methotrexate 🤷‍♀️🤷‍♀️ xx

Mackymay profile image
Mackymay

I had the vaccine last week and was told to continue with all meds. I’m on leflunomide, hydroxy and prednisilone. Some minor side effects but manageable.

allanah profile image
allanah in reply to Mackymay

So pleased for you xx

HanaleiBa profile image
HanaleiBa in reply to allanah

Thanks for weighing in! I have a friend on lefunomide and I'll share this. I'm hoping for guidance on MTX as that's what I'm on - if you hear anything I'd love to know. Clinical trials for past vaccines have been clear that MTX does need to be modified.

allanah profile image
allanah in reply to HanaleiBa

NRAS did say they would try get a statement but look back on my post the lupus society put out a statement saying get your jab done . But yes , check with your doc . Well my rheumy isnt available and my gp doesnt have a clue!!@

They will need to sort this before they start the shielders.

Personally it s a covid jab so similar to flu jab and I dont change any meds at my flu jab.

So no official advice yet . We need to keep pummeling away at the authorities for advice.

AgedCrone profile image
AgedCrone in reply to allanah

What we all need to understand is Covid 19 & it’s mutations are still very unknown quantities.....so even if the vaccines presently available are not yet 100% effective I think it’s definitely worth being vaccinated even if you do get some side effects.I’d rather that than chance Covid...whatever RD drugs I’m on....& I don’t think there is going to be “one advice fits all” , any time soon, we all have to get our own advice as & when we can from our rheumy teams.

Boxerlady profile image
Boxerlady

I think that there have been other posts saying that none of the vaccines are live...

HanaleiBa profile image
HanaleiBa in reply to Boxerlady

Thanks! Yes, these 3 aren't live. I'm curious about how I should modify my MTX schedule, etc.

allanah profile image
allanah

Oxford is NOT L ive, neither is moderna or pfizer . Edited as I typo d!!!!!

AgedCrone profile image
AgedCrone in reply to allanah

Allanah...read what you write before you press send or you will be on the naughty step!The Oxford virus is NOT A LIVE VIRUS, 😅

allanah profile image
allanah in reply to AgedCrone

Santa nd the tooth fairy will get me!!! Its NOT LIVE!!

allanah profile image
allanah in reply to allanah

And ! !!! Lol jeez my hands are giving me jip today. Hope you good AC x

AgedCrone profile image
AgedCrone in reply to allanah

I am on the alert! So sort those fingers...try heated gloves...I found they worked well for painful fingers

allanah profile image
allanah in reply to AgedCrone

Good for you ! Yes good idea . Knee brace on, hot pads on , brufen gel on the go. Think xmas movie called for...

AgedCrone profile image
AgedCrone

Sadly I doubt many people will be able to have individual discussions with their Rheumatologist, but if you feel the need....by the time it comes for you to be vaccinated...do speak to your GP who hopefully will have all the information on the individual vaccine you are being offered.

HanaleiBa profile image
HanaleiBa in reply to AgedCrone

Really? Wow, ok. My US rheumie would never allow me to get a vaccine without her weighing in. In Sept she told me to wait until we have protocols in place. I can go back to her - but figured it would be good to ask folks in the forum in case they'd heard from their rheumie here.

AgedCrone profile image
AgedCrone in reply to HanaleiBa

Most of us here haven’t been able to see our NHS general practitioner F2F since March. If you have a good one he will presumably be reading up on every vaccine that is getting offered to his patients but I won’t be relying on that.You must have learned that medicine here is practised very differently on the NHS, than the systems in place in the US.

You can get a Personal Private Rheumatologist...who will advise you individually like in the US....but like in the US it is expensive.

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

Personally I’d say that my GPs would tell me to speak to my rheumatologist or rheumy nurse .. re Rituximab as it’s a bit different to other meds as you know re the length of time to repopulate B cells. I’d not bet on my GPs knowing too much re Rtx and the vaccine(s) as they haven’t in the past re my own med and even the GP who worked in rheumatology after graduation didn’t know much re Rtx.

I think it awkward indeed to say the least we cannot get our rheumy advice re this but there is a good page on the BSR website re my own med Rituximab and other general meds/vaccine advice. If you are taking a medication or infusion and under the guidance and care of the rheumatology department, you should be able to ask someone re the vaccine and your med. or be sent something but my department don’t send letters even for appointments. I fully understand how difficult it must currently be in rheumatology departments and they’ve fouled up with errors with me twice already this year ... but to be left wondering is not good re which vaccine, for example. I also think they don’t know too with a lot of this, but they do look to the British Society always first at my hospital.

AgedCrone profile image
AgedCrone in reply to Neonkittie17

I should imagine GP’s will be issued with all the info for people on all the Bio drugs...depending on which vaccine they will be giving. I have already got my info from my Rheumatologist....so I can stand my ground when the time comes....I am drifting my infusions just like one does with the Influenza vaccine each year.

I would think once the Oxford vaccine is licensed the others won’t be far behind....then all they have to do is work out when, where & who will be administering it...not the easiest of tasks if the secondary virus hangs around.

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

Good that you can get that info from your rheumatologist .. I won’t get to speak to mine till at least January. I will continue to rely on the British Society for Rheumatology and anything the admins post here. BSR is where my rheumy and her staff look for guidance. Just as you have the info you need from your rheumy, that’s exactly what I want too .. from the rheumy.

Creakywrists profile image
Creakywrists

My rheumy said at my appointment 10 days ago that stopping methotrexate for 2 weeks after each vaccine is likely to increase its efficacy. I’m planning to do just that.

HanaleiBa profile image
HanaleiBa in reply to Creakywrists

Thank you so much!! This is so helpful and matches what I was reading in the research lit. I needed some rheumie validation ;-). So stop for 2 weeks after each dose?

Moomin8 profile image
Moomin8

Watch fb.me/e/3MftG7tJ9Now

HanaleiBa profile image
HanaleiBa in reply to Moomin8

What FB page is it? I can search for it - the link isn’t working for me.

Moomin8 profile image
Moomin8

facebook.com/nationalrheuma...

HanaleiBa profile image
HanaleiBa in reply to Moomin8

Thank you - exactly what I was looking for. I do wish they’d address that it’s 2 doses vs. 1 - so stopping MTX for 4 of 7 weeks over the course. A much bigger decision than just 2 weeks. But, I know I’m a guinea pig if I take it earlier than others - something to both be grateful for and a little concerned about.

Moomin8 profile image
Moomin8

healthunlocked.com/api/redi...

Just listened to this very informative video link. Regarding the Oxford vaccine being live or not- it is live. However, what they did say is that it ok to have even if you're on biologics because it is different to other live vaccines. You'll have to listen in for the explanation because it's too technical for me 😊I believe that NRAS will put a link on their site if you are unable to follow my link.

Creakywrists profile image
Creakywrists

This video link also discussed suspending methotrexate after the vaccine. He suggested talking to your rheumy if possible as it is probably more appropriate to stop it if you are on a higher dose (which I am). It’s well worth watching the whole thing as it gathers up all the questions you could have and answers them!

Moomin8 profile image
Moomin8

I had a reply on the webinar to my question: is the Oxford vaccine live?Clare Jacklin replied:

'Live but different in that the 'live' virus is not one that can duplicate in humans and is only used as a delivery mechanism so the Oxford vaccine, once approved, will be able to be offered to those with RA.'

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