Has anyone spoken to Rheumatology nurses etc and asked about the efficacy of the vaccine. I was told 75 % on Friday others say only 40% ?

[Denise64]

Efficacy?

[helixhelix]

Not sure rheumatology nurses are best people to ask. There has been a lot of research now on real people that is showing that the vaccines are very effective in the general population. With us, the efficacy can be affected by the drugs we take. But overall still very effective in stoppimg you dying!

People on Rituximab and steroids seem to have the lowest response. For the rest of us we are likely to have a positive reaction to the vaccine. And people are currently thinking that even a small reaction offers protection - but no-one knows for sure yet.

[Denise64 in reply to helixhelix]

Hi Yeah its still early days in the data isnt it . But I just thought I would ask and then my friend said she saw her RA nurses last week and they said 40%. I thought oh that's a bit of a difference

I cant see any reason for the vaccine not to have worked.

I think we may have to plod on and see what the data says . Will you be having booster jab and flu Jab ?

[cathie in reply to helixhelix]

And I understand that people on rituximab will be candidates for a booster Phizer. I’ll be first in the queue when it’s announced!

[Neonkittie17 in reply to cathie]

Hope you get your call soon to go for a booster 🙏🏻

[cathie in reply to Neonkittie17]

Thanks - I'll let everyone know when I hear for a heads up!

[Neonkittie17 in reply to cathie]

I have to repeat both Pfizer’s as soon as B cells back as I tested zero antibodies.

[Neonkittie17 in reply to Neonkittie17]

I think a lot of us on Rtx are very concerned about about what it does/did re the vaccines/efficacy. Like myself, I think a lot us on Rtx knew it would blunt the efficacy but some hoped not too much. I haven’t seen on here anyone on Rtx who has said they tested for positive antibodies. I think if anyone on Rtx is concerned seeing the constant comments in the media and most places re Rtx and poor/no efficacy then they should discuss with their rheumy/GP re testing for antibodies and to see if they can repeat the vaccines.

[Downtime]

I asked my rheumatologist last week and he said he thought I had a pretty good immunity. I only take 15mg Mxt now. I have to say I wasn’t reassured particularly as he didn’t seem to have much of a clue. I mentioned the Octave study and Lancet articles and he looked rather puzzled. He’s a man who doesn’t say much and if he can’t get you on another drug or give you a steroid injection he doesn’t quite know what to do!

[Boxerlady]

I think that you'll probably get a different answer from anyone you ask, no matter what their area of expertise. I think that it's easy to expect medical professionals to know more than yourself but in my experience they only know about their own specialism - which is logical when you think about it...

[Mmrr]

I think the answer is no one knows. Those on Rituximab, steroids and possibly JAK inhibitors seem to have a poorer antibody response than others, but what that translates to in terms of efficacy is unknown.

[GinnyE]

Lots of discussion on this last week on this forum , when the JCVI produced its report saying immunosuppressed people should have a third vaccine as research shows the original two may not be enough. The report details the medications and amounts and goes on to say Specialists should get on with advising GPs . My GP said she thought I'd probably be offered the third vaccine as I'm on 20 mg of methotrexate. I've had antibody test which I paid for, and at 1100 she said this was a decent response but this talk of the efficacy waning in time is also worrying. My GP advised me to wear masks anytime I go indoors with other groups and to be careful! She said she was one of the first group to be vaccinated and she now assumes her protection has gone and so she is being extra cautious too.

[oldtimer]

Best place to look that I've found is Zoe - they have been collecting statistics from very large numbers of people and the people running the study are experts in the field keeping up to date with all the articles and reviewing them with expertise. covid.joinzoe.com/data

[AKA13 in reply to oldtimer]

Thank you for sharing this link ........ interesting resource!

[Piwacket]

I had a review with my nurse last week and she said immunity/efficacy is so more complicated that anti bodies but as I am on dual therapy of methotrexate and adalimumab she thinks I will have a third vaccine as well as booster

However if you read JVCI recommendations for third vaccine they do stipulate that protection can still not be guaranteed

The bottom line for us I think is that it is early days and I am going to continue to be careful and cautious as well as trying to enjoy my life

[Dawn7]

I havent spoken to the Rheum nurse, but interestingly, on researching the efficacy of the vaccines - there are a number of studies with statistics for the mRNA vaccines (ranging from 40% to 65% figures) but cant find any on the astra zeneca ... from what I remember of original considerations, it was less effective for those on methotrexate, but have found no figures.. be interested to know if anyone else has found anything? I had the AZ vaccines !

[Mmrr]

Can I add, that my rheumatologist said the only med she was 'worried' about is rituximab. I'm on prednisolone and a JAK inhibitor, she said I should normalise. I suspect much of the information given out by rheumatologist depends on their own risk taking behaviour too.

[AgedCrone]

Tbh…. If you lined us all up and applied the same test after the same vaccination we would probably all come up with a different result.

It isn’t just a case of having the vaccination…you have to take into account all sorts of things…..the condition we are in at the time of the vaccination and particularly….how many different meds we are taking.

You might notice all those who have been tested & have low counts…are

seemingly not dropping like flies!

As long as I’m feeling OK & still standing….I’m happy!

[Neonkittie17 in reply to AgedCrone]

Agree totally we all have a unique scenario and side effects/comorbidities, but I’m very glad I did a Roche antibodies test. Not glad at the outcome of it but I knew. Not always easy to see/hear so many people all over the media and online saying ... I’m glad I’m not on that med. I have proof of zero antibodies ... so something good out of something not so good ... and will be able to have both Pfizer’s repeated at my consultants’ requests now. (That is providing some B cells show up to help out! Would be nice.) Think probably end of the year. Some people have been pleasantly surprised on their meds to find antibodies when they’ve tested and that’s excellent indeed but I’ve not seen any Rituximabers on here who’ve said I’ve had an antibodies test and I have them. If they are a fast repopulater of B cells they will have a much better prospect indeed.

Have you moved yet? Hope all goes well or will go well. 🤞🏻 Also that your side effects after the vaccines have calmed. 💗

[AgedCrone in reply to Neonkittie17]

Yes at last I’ve moved..,still unpacking my quart size house into a pint size one.It’s amazing how you can persuade yourself you hate something if binning it means you don’t have to bend over another packing case….but on the bright side it’s lovely just to see fields & horses & not have cars parked practically in your dining room.

Thankfully my side effects have all disappeared- so unless when I see my rheumy next month he really pushes me to have a third vaccination - I shall pass…my B cells seem to repopulate quite quickly which normally is a nuisance as I can’t get past 7 months for infusions.

My rheumy says for me, age is a worse risk than Rtx…& there is nothing to be done about that except take care.

I reckon why chance feeling so rotten….,,& maybe have an even worse reaction?

Winter is coming on…I’m out in the country & the Covid figures are getting lower here every week….so I shall hibernate & take my chances.

[Mmrr in reply to AgedCrone]

Pleased to hear that you have successfully moved.

[AgedCrone in reply to Mmrr]

Yes at last it happened…but I really did not think I would still have a whole room full of boxes 3 weeks on.🙆

[Knip in reply to AgedCrone]

It's great to hear that you have moved now , AC. I hope you will be very happy in your new home You are just in time to enjoy the butterflies, which still abound in abundance. x

[AgedCrone in reply to Knip]

Thank you…yes late summer is lovely here……but sadly not many butterflies at the bottom of a packing case 🦋Wise words I really wish I had listened to ……to all late middle aged here thinking of down sizing…Do it NOW….do not wait until you have years more possessions…I’m sure like me every 65 year old thinks that you can’t possibly feel any older…..of course you will still be able to get going at 7am & slump down with a glass of wine at 7pm & unpacking will be a breeze! Remember…you really don’t need three dinner services & more than 60 glasses of all shapes & sizes….& whenever am I going to use 8 Escargot plates & holders?

Wake up call…It’s Not a Breeze…it’s hard work!

Three weeks in …… I still have one room full of 15/20 boxes …& 80% of the cupboards everywhere are already full.Aaagh!

But thank goodness charity shops are open & I’m collecting a new circle of friends at the local tip…..who like me have paid to move stuff we are now throwing in skips.

But I am really happy I made the move at last.

[Dobcross1]

I asked during a telephone annual review and was told they've no idea.