Covid vaccine guidance for the immunosuppressed is finally due to be issue by the Department of Health and Social Care

See this article in the Guardian

theguardian.com/commentisfr...

[Lolabridge]

Hooray! But let’s hope it will not be telling us to shield again. 😥

[charisma]

Interesting… so why was everyone being told to get the experimental vaccines anyway, I’d like to know! Rather too hasty perhaps.

The Lancet showed that those on any immune suppressing (DMARDs) or immune compromising (biologics including JAK Inhibitors) drugs have a poor response to those jabs therefore not much protection sciencedirect.com/science/a...

Lancet Vol 3 Issue 7 is quoted in above link and deals with responses to only mRNA vaccines

[Neonkittie17 in reply to charisma]

Professor/Dr Innes on NRAS’ Zoom a week of so ago said he’d would speak again soon re Rtx when the final research articles can be made public. x

[charisma in reply to Neonkittie17]

That’s good! It takes three years for any new drug/vaccine to be deemed fully tried for safety. But efficacy is just as important. 🌸

[Neonkittie17 in reply to charisma]

I don’t think the findings from the Octave will be favourable for us all on Rtx, but I already knew that for my own case. I feel concerned for those returning to work who are still vulnerable, no matter what B and his Gov. have decided. 😢

[charisma in reply to Neonkittie17]

Sadly, I believe so too. No sense in much of what we have bern told, including ok to have Covid vaccine four weeks after last RTX infusion!

Always told before Covid arrived that must have vaccines before the start of any biologic drug infusions like RTX or six months after last one. But suddenly our compromised immune systems are going to respond in just four weeks?!

Afraid I don’t buy that. 😢

[Downtime in reply to charisma]

Ive read the article Charisma mentioned and although it’s quite a complicated read it did seem to say that all the control subjects with RA had a good response after the 2 nd vaccine and highlighted the importance of a second dose. I’ll have another read in a while when my brain is less foggy! 🥴

[Mmrr]

It all seems so foolish not just to hold out for another few weeks, until all age groups are vaccinated, and everyone is as safe as they can be.

[rabbits65 in reply to Mmrr]

I couldn’t agree more 😊

[Downtime]

Another poster (AKA13) has highlighted the PHE report which says that clinically at risk groups have a fairly good response to the vaccine after the second dose. I’m not sure whether this finding is the result of the Octave trial which is finished now, but I’m sure we’ll be hearing the full story soon hopefully from NRAS

[Mmrr in reply to Downtime]

I believe a bigger risk is still with those who take prednisilone not products ing the antibodies, all will be revealed soon. Unfortunately I take prednisilone.

[Neonkittie17 in reply to Mmrr]

Hopefully the Octave report will soon let us know with more accuracy how certain RA meds have behaved. Everything I have read and heard from the rheumatologists (including mine) has said the biggest risks re vaccine efficacy in RA patients are said/thought to be Rituximab, JAK’s and Prednisone. Unfortunately, I have Rituximab and despite there being a gap of 6 months between my previous infusion and first vaccine it seems it wasn’t enough for me. I did the Roche spike protein antibodies test and sent it off (reputable lab/company)and had no post vaccine antibodies. I know I often repopulate my B cells much more slowly than 6 months and feel I didn’t have them back at the time of my first vaccine as I didn’t have my tell tale signs of twinging, flashing joints needing the infusion. My rheumatologist said I need to repeat the vaccines process once my B cells are back. I’m having them testing end of this month and 2 monthly thereafter (also because I’m getting side effects from Rtx and need to address that.) I asked her to check back to my B cells at the time of the first vaccine and seems there weren’t any.

[bienassis in reply to Neonkittie17]

I've heard nothing from my rheumatology department about the efficacy of my pfizer vaccines - I take infliximab (anti-TNF) as well as methotrexate. Over six months since the second vaccine jab. My rheumatology nurse just says my reaction would be suboptimal.

I'm waiting for the full report from the Octave study. Some results, I understand, are available but not the full report. Meanwhile, I'm continuing as before - that is staying away from shops, public transport and any other indoor environment.

Yes, I'm lucky - I have long since been retired and have no need to leave the house. But the new situation starting on 19th July could well be a disaster for those like bus drivers, taxi drivers, shop assistants - anyone, in fact, serving the public.

I was very concerned when the builder doing some repairs on the exterior of our house said the pub was packed full of football fans when the semi-finals were played with little regard for social distancing or mask wearing.

You, NK, are at greater risk with the Prednisolone and RTX. I have no idea about the risks of Infliximab - nobody has mentioned it.

So many rumours flying around; we must listen, note and be patient I suppose.

[Mmrr in reply to Neonkittie17]

I'm on a JAK inhibitor and prednisilone 😥

[GinnyE]

I googled “PHE vaccine effectiveness” and got the report. Says vaccines are at least 80% effective for vulnerable people, using over a million people in evidence. Great news.

[Mmrr in reply to GinnyE]

Did it say anything about those taking prednisilone?

[GinnyE in reply to Mmrr]

Didn't refer to actual medications people are on but to "the immunocompromised " whom, I would guess would be taking all kinds of medication.

[Mmrr in reply to GinnyE]

I'm aware prednisilone is one of the big risk factors

[Neonkittie17 in reply to GinnyE]

Depends on the RA meds you take though.

[GinnyE in reply to Neonkittie17]

Yes, of course, that is an important point. It’s more of a concern on some meds. Can’t relax yet.

[Neonkittie17 in reply to GinnyE]

I hope the governmental guidance is going to make that clear. I’m sure there will be updates to the green book linked from there, as before. Not every one is a researcher or has been told by their rheumy/medical team.

[Hidden]

Thanks for posting. I am going to revert to shielding. It’s going to be mayhem. On another forum here it said that 2/3 of hospital beds are being ‘saved’ for covid patients.. a directive from on high. The ‘no mask’ thing is irresponsible and dangerous. And still no Long Covid figures. There will be thousands with this… it’s really upsetting for us all I think. Wanton disregard.

We just need to continue to be careful.. I am really happy I will no longer be at risk of death… just am fearful of Long Covid now..

[Neonkittie17 in reply to Hidden]

Makes sense CL re the hospital beds. 😢 I will feel so upset for the NHS/ frontline workers if this escalates badly and let’s hope no new variants, etc.

I have no antibodies so I’m shielding. Until I can repeat my vaccines. Gov.uk advice is general so far and not specific for those on certain meds. It could give people false hope by it being a generalisation more at the moment, but hoping they will add more soon. Think they will be waiting for the Octave results too.

I saw on BBC news online that over 90 medics and scientists/organisations have written to Boris & co to ask them not to open up everything next week and it will be ignored of course. He won’t back down. I so don’t want this to be an another almighty gaffe. x

[Happy5]

Sobering stuff

[Mmrr]

Most GPs know very little about immunosuppressants. My own GP is pretty good (married to a rheumatologists) but some of the others , nice, kind....but had never heard of JAK inhibitors/couldn't spell or pronounce my meds. It doesn't sound too good if they are then responsible for me keeping safe.

[Angjoplin]

I don't have the option to shield. My boss has even told me to uninstall the covid app. I'm on Jak and its extremely worrying. Tbh I just want to get the blooming virus now. I'm so fed up living with the stress and worry. Seems there will be nothing to do to avoid it so I just want it done with.

[Mmrr]

Yes, part from my rheumatologist, I trust my own judgement based on reading reports / NRAS than my GP. I won't be asking them for information.

[Neonkittie17 in reply to Mmrr]

Me neither.

[Neonkittie17]

My own GP trained in rheumatology after she qualified but it was a while ago and she is the first to admit she doesn’t know too much about all the biologics .. even though she does the older RA meds. I’d go to my biologics rheumy first but appreciate not everyone can get hold of them! It took me an age to get to speak to her recently.

[Neonkittie17]

Yes, hopefully the rheumys will have more answers soon for RA patients. I think if you didn’t ask you didn’t get told was the case for a lot of patients. Thankfully NRAS and other reputable websites have provided as much info as they’ve been able to. The NRAS zooms were very good too. I managed to speak to my rheumy three weeks ago. She was helpful.