Can I apologise in advance...: I know this has... - PMRGCAuk

PMRGCAuk

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Can I apologise in advance...

Sophiestree profile image
24 Replies

I know this has probably been done to death, but I am curious as to the reasons for and against injecting TCZ before/after the vaccine?

My Rheum Consultant, who I have no faith in, said to carry on, but I know others have been told to hold off. My TCZ is on Wednesdays and my vaccine is next Saturday. Shall I just carry on? or hold off the next two? Not sure I would actually tell the consultant to be fair.

My only concern is I have only been on TCZ for 6 weeks? Is that enough to not be concerned skipping a couple. Or just carry on with Wednesdays as per usual.

She has told me to taper the pred every two weeks. Tomorrow will be my second week of 12.5mg, then two weeks on 10,9,8,7,6. She didn't get any further than 6mg!!

I am pretty relaxed either way, but would appreciate anyone's thoughts on this. I am guessing it will be AstraZeneca as it is in a pharmacy rather than a vaccination hub. So prepared for some kind of reaction as many of my friends have had a rough time of it afterwards.

I really can't do short posts can I?

Thanks in advance. This site is my daily go to and find it invaluable.

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Sophiestree profile image
Sophiestree
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24 Replies
PMRpro profile image
PMRproAmbassador

There seem to be mixed opinions. It is a very effective immunosuppressant and the concept of taking a holiday from injections if you have an infection/need antibiotics for it is to allow the immune system to recover a bit in order to develop the immune response in the 2 weeks post jab. The same applies for methotrexate.

Logically, you would extend that thinking to a vaccine and a study was done for methotrexate and vaccine efficacy

thelancet.com/journals/lanr...

link.springer.com/article/1...

I think you pays your money and you takes your choice ...

Sophiestree profile image
Sophiestree in reply toPMRpro

Yes, I think you are absolutely right. Thanks for the links. Interesting reading re the trials.

Rugger profile image
Rugger

Like you, my Rheumatologist said to carry on with TCZ, as to risk a flare of the GCA was worse. Unlike you, I have faith in her, so I carried on and didn't omit a dose of TCZ before or after the vaccination. Like PMRpro says, we choose what to do! If you decide to miss two doses, what will you do about the fortnightly pred taper.......?

I had the AZ vaccine and had no ill-effects at all - was that because my immune response was minimal? Who knows?

Sophiestree profile image
Sophiestree in reply toRugger

Interesting. I have just been looking it up a bit further and it seems Methotrexate could be an issue but everything else likely to be OK. And yes, you are absolutely right, hence my slight hesitation as, learning from this forum, it can take up to 3 months for TCZ to kick in properly and I am having some, albeit slight, symptoms returning. I realise that the utter exhaustion come 2.00pm when it was like someone turned a switch off, might likely have been the reduction in pred/adrenals rather than LVV, but the other symptoms that I have are definitely the LVV.

I have a few days to think but am leaning towards just carrying on.

Thanks for your thoughts.

jinasc profile image
jinasc

I add AZ and no problems at all.

Sophiestree profile image
Sophiestree

Love the DON'T DO THIS!!Thanks for this

SheffieldJane profile image
SheffieldJane

Hi there!I was advised to carry on as normal and have my injection by both my Rheumatologist and my GP. Mine was the Astrazeneca.

As it happens I was on antibiotics and had to skip the Tocilizumab for that reason. I am still here 😉

Sophiestree profile image
Sophiestree in reply toSheffieldJane

Good to hear. Hope you are OK.

Suzita76 profile image
Suzita76

Hi Sophiestree, if you look back to my previous posts, I was advised to delay my TCZ jab for 24 hours after getting my Covid jab ( Pfizer, 6 weeks ago), though no one could explain the logic behind this advice). Since TCZ has a half-life of 10days, I couldn’t see it would make a difference. I have had no problems at all.

Sophiestree profile image
Sophiestree in reply toSuzita76

Interesting. My TCZ seems to be in the middle of the jab either side.I didn't know about the 10 days, thanks for the info.

FRnina profile image
FRnina

Hi Sophiestree. Like Sheffield Jane I was told (but here in France) to carry on as normal. My normal now is fortnightly injections of TCZ (I stopped with Pred mid January). I had my 1st Pfizer vaccine 3 days ago: it happened to be 3 days after my TCZ injection. No ill effects any which way.

Sophiestree profile image
Sophiestree

Great, thank you for that

Helipad profile image
Helipad

Hi, like you I had been on TCZ for a relatively short time and I was advised to carry on even when I had my vaccination which I did, I had the AstraZeneca and didn’t suffer from any side effects.

Sophiestree profile image
Sophiestree

It does seem to vary from person to person doesn't it re the side effects. I am just going to go for it and see what happens! I don't want to not have the TCZ when it is not even two months yet. Thanks for letting me know how it was for you.

Frenchduck profile image
Frenchduck

Hi, I have GCA. I have been having weekly injections of TCZ, every Saturday, since last August and my specialist wants them to continue on a weekly basis until mid-April, when she'll consider less frequency. I trust her and she has been right about everything so far. I had my 1st Pfizer vaccine on Friday. As my TCZ was due the next day I contacted her and asked if I should delay it. She told me to leave it until Monday or Tuesday but absolutely no longer. Hence, I'm having it tomorrow. This made sense to me as it is giving the vaccine nearly 4 days to work without interference of other medication. As research hasn't been done yet on people like us we are a bit like guinea pigs so I went for what sounded sensible and her professional advice. My TCZs will now be every Tuesday to keep the weekly format. I'm not taking any prednisone.

Sophiestree profile image
Sophiestree in reply toFrenchduck

Maybe I shouldn't do it this Wed and wait until Saturday? Or Sunday?

Frenchduck profile image
Frenchduck in reply toSophiestree

That sounds like the best option but if your TCZ jab is weekly then you'd switch the day to the Saturday or Sunday thereafter.

Sophiestree profile image
Sophiestree in reply toFrenchduck

Yes, but that's fine. I don't mind that, in fact Sunday would be easier for me to be honest. The original jab date was for Saturday which would have been fine, but Thursday is a tad too close. Thanks for that. Really helpful

Sophiestree profile image
Sophiestree in reply toFrenchduck

Love your screen name by the way! Brilliant

Frenchduck profile image
Frenchduck in reply toSophiestree

Thank you. I love duck! Good luck and I hope it works for you.

Sophiestree profile image
Sophiestree

Yes, that's interesting as I have just been given an earlier vaccine date now of this Thursday and my jab is normally on Wednesday - arghhh - now I am all over the place as to what I should do.

AncientMariner profile image
AncientMariner

I have been on TCZ for six months and now slowly tapering down Prednisolone. I had the Astra Zeneca Oxford jab a month ago and carried on with my TCZ regardless and have had no reaction from the vaccine other than a mildly runny nose for a week. I took the decision myself as ultimately that's what we have to do but I appreciate people like to make it an informed one. That's the issue as we are all facing a set of new and unusual circumstances including the professionals we would normally expect to advise us so what evidence they have available to them to advise upon is still in the making and may not become quite evidently reliable for some time yet. When you reflect that professional opinion will differ even on better known subjects how a consensus is ever reached on anything baffles me. I tend to think there is just a percentage majority for one side of thinking as opposed to a percentage minority as to another. That doesn't help much I guess but I think as you have lost faith in your Rheumy this may reflect your experience. Any condition is a personal journey, and I was told for two years I was too young to have GCA at 53 which is nonsense as research I have done has shown younger victims but square box thinking prevailed until last year when I was told I did suffer from GCA and placed on TCZ so it is one of those. Sorry I can't be of more help.

Sophiestree profile image
Sophiestree in reply toAncientMariner

Yes, thank you for this. I hope you are on the right road now. Good luck.

AncientMariner profile image
AncientMariner in reply toSophiestree

Thankyou, Once you have made a decision and act on it you will feel better, the anxiety of anticipation and the mental ghouls that accompany it is the hard part. Decide and stick with it.👍

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