Vaccines and the immunosuppressed webinar

[CSLO]

Just thought I'd post this link to the latest Zoe Covid Study in case anyone is interested.

covid.joinzoe.com/webinar/v...

[Susieliz39]

Thank you 😊 I was going to post this this too but you’ve beaten me to it! Think it is worth participating in this webinar so I’m going to register. I’m having my 3rd dose tomorrow though so hope I don’t hear anything too late i.e. I should have paused the immune suppressant I’m taking🤦🏼‍♀️ I probably need to look on British rheumatology guidelines but when I asked the rheumy nurse last week, they said no. I wonder if anyone has any more information about this? Sue x

[CSLO in reply to Susieliz39]

Hi Sue

,Great minds and all that!

I had my third jab on Friday after much chasing around. My rheumy, who I saw for a face to face three weeks ago, read out the directive re having the third jab and my Mycophenolate. She told me to not take it the day of the jab and for the next seven days. I restart it again on Saturday.

Others have commented here saying their GPs and nurses had said to just continue taking it. As ever, nothing is straightforward!

Good luck tomorrow. Aside from an achy arm I had absolutely no reaction to the third jab, it was much like my first. Strangely I did react to the second for a couple of days.

[Susieliz39 in reply to CSLO]

Hi CSLO

I’m glad that you’ve managed to have your 3rd dose 👍 it must offer a little reassurance to you. It’s really interesting to hear what your consultant had to say. I’m wondering now if I should postpone my vaccine until I have had chance to discuss this properly with my consultant. Do you know which directive your consultant read from? I’ve just read the ‘Green Paper’ updated in September and it refers to a medication ‘holiday’ if possible. When I had my second dose, I was in between cycles of chemo, so fortunately timed it right and did mount some immune response- I completed a home test that gave me this result. I’m not sure that I will have the same outcome this time due to now being on immune suppressants. It’s a minefield, isn’t it? 🤦🏼‍♀️ Sue x

[Hidden in reply to Susieliz39]

It depends which immunesuppressant and how often you take it. I asked a rheumatology registrar during my review - if I should stop my maximum dose of Mycophenolate and he said if you actively want to do this (it is not the official guidance from BSR to stop any immunesuppressant) then I would take a week off AFTER the vaccine rather than any time off before. So, as I’ve read this before about MMF, I decided to do it and gave it 7 days from the day of the vaccine. I read that an American study advises a week after with MMF - so what he said about a week after seemed in keeping. I think Mycophenolate is one of the most immune-suppressing ones, next only to Rituximab. Methotrexate and others seem not as bad.

[CSLO]

Hi Susie,

I'm afraid I don't know what she read it from. It was some sort of rheumatology directive which she specifically looked up.

Oh it's really not good enough that you're having to scramble around for direction. Is there a chance that you could call your rheumy dept first thing tomorrow and ask? I'd be loathe to turn down the offer of a jab but on the other hand, you want the best opportunity to build an immune response.

I'm so sorry I can't be of more help. others here seem to have been told to just continue their meds but we're all so very different and maybe it's best that you follow authoritative advice.

Could your GP advise? Are they easy to access and talk to?

Oh good luck to you, I hope you manage to speak with someone in the know!

[Hidden in reply to CSLO]

I was told same as you by a registrar but he said it isn’t official guidance. They don’t want people to flare who started on these meds more recently. I think the guidance is more targeted if you speak to someone who knows about your case and clearly a week off from the day of vaccine is the more personalised advice for those who have been taking Mycophenolate for long enough to be able to take a week off. I forgot on day 6 and took it but only half my usual dose. Hoping I’ve mounted a better response this time.

[Susieliz39]

Hi CSLO and 282523

I’ve had my vaccine this afternoon but did speak to the rheumy nurse beforehand. She went through the British Rheumatology guidelines and said that at present the advice from my consultant is to continue with the mycophenolate. I’m guessing it depends on individual circumstances. As I’m not stabilised on them yet, perhaps it has something to do with it.

I’ll do an antibody test again in a few weeks and compare the result from my last vaccine.

Sx

[CSLO in reply to Susieliz39]

I'm really glad you got it Susie, hopefully you'll get a good immune response.

As 282523 said, advice about our meds is best taken from those managing our conditions as so much will vary between us.

Let us all hope that this third jab will allow us increased protection from this dreaded lurgy! So few around here are wearing masks now, we need all the help we can get!

Hope you manage to bat off any side effects.

Good wishes to you.

[murtoz]

did anybody get a link to the webinar? I was sure I had registered but can't find any email regarding it. I have re-registered again today but it said the link would be sent 24 hrs prior to the webinar but of course it is this afternoon so not sure if they will still send it to me.