Covid vaccine and mycopenolate mofetil: I take... - LUPUS UK

LUPUS UK

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Covid vaccine and mycopenolate mofetil

Bronn
Bronn

I take 1500mg of this drug and need to know will it prevent the vaccine from working correctly to keep me safe. 🤔 I have telephone consultation with rheumy next Wednesday and will ask her but its going over and over in my head. It is driving me crazy. I have asthma, Lupus and RA so what band of people am I in to get vaccination. Help me put my mind a lil at ease please. 💐

37 Replies
Hidden
Hidden

Very good question but does anyone actually know about taking existing medications and vaccinations risks?🤔

Any documented adverse reactions?

Bronn
Bronn in reply to Hidden

I've read that immunosuppressents will mist probably not allow you to get 100% benefit if Covid vaccine 🤔 Going to speak with gp and rheumy but thank you for getting in touch 💐

katidid
katidid in reply to Bronn

Can you keep us posted on this? I haven’t heard a peep about it from any of my physicians or any health departments.

282523
282523 in reply to katidid

Me neither. I watched a webinar hosted by the BSSA - rheumatologist Dr Elizabeth Price speaking about looking after ourselves and she answers a question specifically about immunosuppression and the vaccine. bssa.uk.net/live/news/news7...

I take 2gms of mmf and it puts us in group 4.there is a chance it could cause a flare and as they dont know what kind of immune response we will produce shielding must continue...read quotefrom Paul below......

As you may be aware from our website article - lupusuk.org.uk/covid19-vacc... - people with a suppressed/compromised immune system are advised that the efficacy of the vaccines is not yet fully understood for this group so precautionary measures (such as shielding) will need to be continued until it is clearer.

Try to put it out of your head and be patient.....weve still got quite a wait

I am due my vaccine Friday only because I’m CEV and on mycophenolate and work for NHS - the info we received said it may not fully protect anyone with immunodeficiency but they don’t know as not enough data to check but fine to have any of the vaccines - I’m hoping they check after I have had both doses to see if I have the antibodys!

I was wondering if they would check for antibodies in my dmards bloods.hope friday goes well x

Bronn
Bronn in reply to Spanielmadlady

Thank you for your response waiting for GP to phone me back now.

Bronn
Bronn in reply to Kelbol1

Thank you for your response. Take care 💐

Bronn
Bronn in reply to Kelbol1

Thank you for your response and take care. Let me know please if you finf out about antibody check. 💐

Bronn
Bronn in reply to Kelbol1

Thank you. Let me know about antibody check if you find out please 💐

Kelbol1
Kelbol1 in reply to Bronn

Will do going to ask when I get bloods taken see if the DMARD can find out

Bronn
Bronn in reply to Spanielmadlady

Thanks, take care 💐

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May help

It may not work as well as it would for someone else but, like the flu vaccine, the body will have had some practise at recognising the virus. There are different sorts of immunity - and there is evidence that the long term memory part is triggered in everyone.But the vaccine doesn't mean you can go out and about - certainly not until at least a week after the second shot. By then there will be loads of data and evidence about how well it works in various populations who have been monitored right from the start of vaccine roll out. Then they will tweak the information as to who does best with which vaccine.

It won't be perfect - but it leaves us all better off than without it so there is no point getting in a stew about it and when the call comes - accept it gratefully. As an Australian doctor said the other day: "It isn't a case of "which is best", it's a case of this is better than where we are now."

Bronn
Bronn in reply to PMRpro

Thank you PMRpro, much appreciated 💐

Mmm.. good points, I’m worried about it maybe causing another flare as I’m only just coming down from one 😳my dermatologist says go ahead ASAP tho .. so I shall .. on 30 mls steroids still at the moment.. tapering..I’m just over 70 so might get on 2 nd tier hopefully 🙏

You may all find this article interesting:

elemental.medium.com/should...

It includes questions relating to patients with a/i disorders. The main point there is that it is a good idea to make sure you aren't in an active flare when you have the jab.

Paul_Howard
Paul_HowardAdministrator

Hi Bronn,

As people have said in the comments below, at this time we do not know if (or by how much) immunosuppressant medications may impact the efficacy of the COVID-19 vaccines. There are research studies looking into this. I saw yesterday that researchers in Leeds are inviting immunosuppressed patients to have blood tests before vaccination and two weeks after to measure the immune response. Hopefully, we'll have a better idea of this soon. In the meantime, the guidance is to continue taking precautions (such as shielding) after receiving the vaccination.

Bronn
Bronn in reply to Paul_Howard

Thank you Paul 💐

282523
282523 in reply to Paul_Howard

Hi Paul. Just wondering how immune response is measured in bloods before and after? Is this inflammation markers or immunoglobulins or other do you know?

PMRpro
PMRpro in reply to 282523

I imagine it will be the specific antibodies to Covid - the antibodies required are specific to each vaccine. The level you need for immungenicity is established over time and long term studies to see how they fall off, some do, some don't, and it also depends on how they rise in response to a subsequent exposure.

immune.org.nz/vaccines/effi....

282523
282523 in reply to PMRpro

Thanks for explaining. I was being a bit dim - couldn’t think how they would be able to tell from our blood whether or not we had mounted an immune response.

Plenty of time for me in Scotland as they are running behind and CEV people are lumped in with over 65s I think so we probably won’t get it until March/ April here.

PMRpro
PMRpro in reply to 282523

I live in Italy where the roll-out has generally been good but in our region they are lagging behind for some reason. I don't expect anything before Easter ...I think they said somewhere that some people were booked in for shots and didn't turn up so they had to be binned - they should get the bill, full cost ... But if they had called me and offered it to me if I could get there I'd have been out the door in minutes ...

282523
282523 in reply to PMRpro

Me too. Although I’ll probably just try to check with my rheumatologist if I speak to them first. Not sure whether to stop taking my Mycophenolate prior to give the vaccine a better chance of efficacy.

PMRpro
PMRpro in reply to 282523

No-one seems to have considered that have they?

282523
282523 in reply to PMRpro

No! Like the poster and others I’ve heard absolutely nothing apart from further Scottish government letters telling me to shield and wait. I think it’s all being done by age group. My GP practice has been closed to patients all week in order to vaccinate the over 80s

282523
282523 in reply to PMRpro

This webinar on the BSSA website was the most useful because the rheumatologist speaks about the vaccine for immune suppressed people in the Q&A

bssa.uk.net/live/news/news7...

PMRpro
PMRpro in reply to 282523

Do you happen to know when that was discussed - what time on the recording?

282523
282523 in reply to PMRpro

It was live at 3pm on Tuesday

PMRpro
PMRpro in reply to 282523

No, I meant the time on the recording. Found it - right at the end about 51mins. Excellent.

What a lovely lady! I'd take her as my doctor any time! Bit scathing about Salisbury!!!!!!

282523
282523 in reply to PMRpro

So glad you found it - yes she’s lovely isn’t she I wish she was my rheumi too!

I think it’s worth watching the whole webinar for most people anyway so I won’t apologise for misunderstanding what you meant! 😉

Paul_Howard
Paul_HowardAdministrator in reply to 282523

Hi 282523,

The guidance is generally not to stop immunosuppressant therapy to have the vaccine - arma.uk.net/covid-19-vaccin...

However, in some cases consultant's may advise individuals otherwise and we would suggest that their recommendation would override the general guidance. If you are unsure what it best, we suggest you discuss it with your consultant when you are due for vaccination.

282523
282523 in reply to Paul_Howard

Thanks yes I will 😊

Paul_Howard
Paul_HowardAdministrator in reply to 282523

Hi 282523,

I'm afraid I don't know the exact details of this trial, but I imaging they will be measuring the COVID specific antibodies.

282523
282523 in reply to Paul_Howard

Thanks Paul - yes I was just being really dimwitted. Partly thinking maybe I could just ask them to add it when they run my monthly Mycophenolate monitoring once I get called for vaccine.

I'm in group 4 as I have lung involvement with lupus. I take mycophenolate, steroids and a multitude of medication. I had a telephone consultation two weeks ago with my rheumatologist and he is keen for me to have the vaccine earlier and carry on shielding. He has written a followup letter to my GP, he also sent me a copy and has requested it earlier if at all possible. My sister who also has lupus and lung involvement had her vaccine two days ago, her surgery seems to be on the ball with vaccines. I would think you would be in group 4 with asthma, lupus and mycophenolate. Meg 🤗 xx

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