Does anyone know whether we as rheumatoid patients will be offered the vaccine early, and which one? Any ideas?
Covid vaccine: Does anyone know whether we as... - NRAS
Covid vaccine
Written by
Canada3
To view profiles and participate in discussions please or .
Read more about...
117 Replies
•
Don’t know which one but my nurse said the medics/ care staff and vulnerable like us are first she told me it’s all set up just waiting for the go ahead .
None have been passed yet but if passed the list is healthcare staff followed with care home staff then " vulnerable" then down the age groups
I think most us who are under 70 will be pretty far down the list unless we have other things as well as RA.
No I think if you were on the shielding list age will be immaterial but then it goes down the age groups. If they get the logistics and delivery right they could have it all done by easter time! We will see
Yes, shielded are now 4th on the list.
As long as I'm on the list I'm happy. Still cant go far till my hubby done though as hes my carer. Hope they think about taking these things into account...
I thought about that from the beginning re carers. I’ve written to my GP on Monday and will follow it up with a phone call on Friday and also I’m seeing my practice nurse for a blood test tomorrow so will ask her advice. Both GP and rheumatology have let me slip though their nets re not adding me to their CEV registers.
I read that the under 65's and are in the vulnerable group are sixth on the list. I'm 63, my husband is 65, according to that he'd have it before me. Doesn't make sense, it's me that's had the letters saying I'm extremely at risk if I catch covid etc etc., not him.
It’s changed recently. Apparently anyone shielding is in the 70 and over tranche now.
The Pfizer is being given to health care as it should pass this Friday then next week oxford apparently
Hopefully we won’t have to wait too long xxx
This is the latest news. Some of the other updates about being sixth on the list appear to be older. This is four days ago saying anyone shielding is 4th in the list.independent.co.uk/news/heal...
Yes the lists got updated, ECV is now 4th, we got bumped up! (For those that were shielding)
Not everyone with RA is in the extremely clinically vulnerable group, in fact I think an awful lot of people won’t be. So don’t get your hopes up as will be months and months yet.
But the more people who are vaccinated around us the safer we will be anyway.
Yes I’m aware hence saying for those that were shielding, I’m ECV due to meds and comorbidities but I know lots aren’t in the shielding category. ECV has been moved up from being in with the over 65’s if you see the latest guidance. None of the vaccines have been tested on the immunocompromised to my knowledge so there are lots of questions still to be answered.
Is it not a gamble as far as I'm aware it's not been tested with anyone that has a low immune system
My thoughts exactly
What I had read the test was carried out on health adults 18-45 but no one with any form of illness i.e. Asthma Ra cancer etc my thoughts was shouldn't they have had a wider broad stream of people to ensure it would work
• in reply toBully915
Older people, including over 70s, have been included in the testing. I've seen/ heard some being interviewed on tv and radio. They would have chosen people in good health as they need to know it's safe for them before testing on people with underlying health problems. After all, if some healthy people have a bad reaction, it's more than likely we would, but it will definitely be tested on volunteers with underlying conditions before it is dished out generally. I have volunteered.
Bully915• in reply to
I totally agree I have volunteered as well . Unfortunately we know healthy adults have been ok but they should have used adults with underlying health conditions too this would have ment we are in a position to make a sound judgement
• in reply toBully915
I'm pretty sure they will test it on volunteers with RA and other diseases before doling it out. I feel fairly confident personally as I'm only taking methotrexate and people on one conventional DMARD have been found to be at no greater risk of covid-19 because of it. So I'd risk having the vaccine on the same grounds. However, I'd be a lot more anxious if I were taking biologics. Let's hope they call us up as guinea-pigs soon!
I’m not amti-vaccine, but I’m in no rush to be at the front of the queue!
First or last it's the same vaccine, safety checks were passed by independent regulators. Its science, ...
Sure safety checks have been done, but with any new drug you will get adverse events. We are all individuals, so there will be a range of reactions and they will be monitoring these closely. They have apparently increased staffing on adverse events monitoring specifically for this.
So it may well be there are further tweaks in dosing and timings worked out to get best effect. Hopefully nothing more than that.
Normal procedure to yellow card any drug. Adverse reactions in the study have been slight headache, sore arm for a day or two.
I’m not anti this vaccine at all, just aware that in the elderly and immunocompromised vaccines can work a bit differently. And that can take time to work out. So not in a rush (well doesn’t matter even if I was I wouldn’t be getting it for a long time yet!).
See below link. The data is there ..
The vaccines will change, they all do , like the flu jab , as the viruses will mutate naturally . But now they have methods it's easier for them to continually work on them. We need global warming and food sourcing to be addressed. We need to fund scientists properly, look what happens when we do !
Wrong
Scientists don't always get it right. Would you volunteer to get it first
Yes yes yes , in no doubt at all. I would have been in the trials of picked. . Please read the data in maureen link below
Great news about the vaccine. Does anyone know either whether there are contra indications with the drugs we take for RA?
I also wondered about this and whether you can only have the vaccine if you take certain RA drugs. I’m on biosimilar injections so not entirely sure if I’m eligible to have the vaccine or whether I’d have to wait for the antibody one they’re working on. There’s been nothing published about this as far as I can see.
Hi I'm on biological drugs too, it's all about the T cells and I'm on an anti TNF blocker so I dont think I can have it. I'm going to ring the company today and my RA team and try get some answers.
If not the anti body one is not far behind.
Xxx
Thanks Denise please let us know the answer. I too am on a biologic and Methotrexate and I am sure there are quite a few of us in a similar situation🧐
I've tried getting through to RA nurses they have now stopped calls, they are probably up the wall with it all.I'm sure they will be in touch soon if there is anything important to tell us. Like the when ,where n hows
Xxx
Mine are anti TNF too so will attempt to get some guidance from my Rheumy team. Fingers crossed!
The guidance sent to gps states they are both safe in immunosuppressed patients, and should not be withheld, but may get a sub optimal response. Here’s the chapter from the book sent to GPs
assets.publishing.service.g...
Even so it appears from the studies and Prof John Cambells work that if the vaccine is say 60% efficient and you are in the 40% who may catch covid after vaccination for whatever reason, for example, you get it very mildly and there were no hospitalizations at all in those vaccinated who caught covid
Thanks Maureen that was very informative
No
No in fact that's why clinically vulnerable have been pit high on the vaccine list
No any drug is monitored in a yellow card scheme normally . And see NRAS statement
Amazing news this morning. Pfizer vaccine approved and ready to go. What a fantastic Christmas present. I just hope that the majority of people take it up or it will be pointless.
And I just hope that people don't start to relax with the precautions- I worry that people will start to think that if the vulnerable have been vaccinated then it will be ok not to follow rules.
Exactly and I fear some will. We will still have to take other precautions after veing vaccinated but I hope that after being vaccinated we wouldn't be very ill with it if we caught it. My sleeve is already rolled up.
I gave two friends in itu today. Their families wish the vaccine had been out to weeks ago
I am sure they do. Sadly lots of people will have missed out on the opportunity of the vaccine but we must look forward with hope that many lives will be saved. x
😢
Thank you. The irony is not lost on the families. I hope the treatments so far will help xx
Hoping they will be alright. 💗💗
As I'm on a biologic I'm not sure I'll be able to have this one. I'll have to wait and see.
I think our best bet is the Oxford one.
Was that one thought it be less effective?
This is what I saw in today’s BBC online news:
Two full doses of the Oxford vaccine gave 62% protection, a half dose followed by a full dose was 90% and overall the trial showed 70% protection.
I would hope then you’d get the half dose followed by the full dose to give 90%.
Yes I think so but I meant that I had heard that we, the immunosupressed couldn't have the pfizer vaccine but would be able to have the astrazenica one. This is a while ago so infornation may have changed now.
I hope we will hear more info re which is best for us soon. We don’t want to rush off for a vaccine which isn’t as effective as something else which we could benefit more from.
Me too .. want to know if Rituximab affects it. How long you have to have to wait after the infusion to have the vaccine.
I don't know. This is just my opinion. I think we may have to stop meds for a couple of weeks before vaccine. It makes sense to me. When I had my gallbladder removed I had to stop mxt for 2 weeks before and 2 weeks after and I was fine. It stays in the system for 6 weeks
I had a day op which took an hour under GA in March and was advised to stop Mtx a week before but not to resume it until six weeks after as I had bleeding that wouldn’t heal easily due to the type of op. All normal but my nurse said not to resume Mtx for six weeks. As it wasn’t my main RA med it wasn’t a problem.
I expect there may be some advice from rheumatology but I don’t expect my department to write to people as they don’t tend to send letters (clinic reviews are sent via the main appointments centre computer) but they may need to send some info soon to patients as they could get overwhelmed with queries on the helpline. They did re the virus and RA and recorded a message around April time on the helpline not to ask questions re the virus.
Yes, I expect them to say to stop tablets or injections a week or so before/after etc. It’s a bit more confusing for Rituximab (which is my main med and I’m trying to find out about) which is given as an infusion every six months minimum. Those on Rtx would need to know if you have to time the infusion and vaccine several weeks or months apart (as the advice is for the flu shot.) Haven’t seen anything so far advising re this. Hopefully we get information soon. Our rheumys probably don’t have this advice to give us at present.
I think we are some time off yet. I am not sure how vulnerable I am. Apart from the obvious compromised immue system, I have bronchiectasis but I am not on any medication for it so it can't be severe. I don't know where that will put me in the queue.
I am very sure I’ve seen bronchiectasis as being on the list of respiratory conditions which place a person into the CEV category.
Thank you
If I find it I’ll direct you to it.
Thank you very much.
Sorry Sheila, I could never find the article which did list bronchiectasis as it’s a chronic condition and my friend has it so I know it can be awful when you get colds.
My rheumy consultant advised me yesterday....stop the mtx two weeks before the vaccine and resume a week later. Carry on with the hydroxy and sulfasalazine.
News suggests this morning that the Oxford/Astrazenica vaccine could be passed as early as next week
Good question , simple answer is, it's still being worked on. It May well be that different countries will use different vaccines. It may well be that if you want to travel you will need more than one. (At this point).As where you are on the list to receive it, that will depend on the job you do then your health and age.
Its looking as if it's going to be at least February before an effective vaccine will be available for you. ( please note I may be completely wrong and you get it sooner) 😁
I know it's been hard but please don't loose hope we are nearly their.
In the mean time if your not already doing so take vitamin D and zinc. They hav D been medically proven to make a huge difference in how sick people become with covid. It really is a life saver.
Hope this helps
Chris
I think February is optimistic for most of us. I am under 65, only take a biologic and MTX and have no other health conditions. So I’m assuming I’ll be vaccinated in the 60-65 age group as normal which will possibly not be until middle or end of next year.
I'm more worried about the company that has been chosen to provide the vaccine than I am about covid. Pfizer has a horrendous record of profertiering courrption and even atrocities in the third world. They just can't be trusted.
I would feel a lot happier taking the Oxford vaccine.
Sadly Pfizer being handed the contract comes as no suprise.
Pfizer vaccine stocks will be used up in hospitals and care homes as it needs only to be moved 3 times and at low storage temperatures, however this has already been done all over Africa successfully fir the Ebola vaccine. I think the non live oxford one which should pass next week is at normal flu vaccine fridge temperatures and logistics and we have millions if doses of it ready in this country
I am 70 in February. I can't think of a better present.
Good point about the Vit D. I am taking part in a research programme into the efficacy and dosage of the Vitamin. After sending a blood sample I was very surprised to hear back from the research team that my levels were low and they were sending me six months supply of tablets. I say was surprised about my levels because in Summer I spend a lot of time outdoors playing golf or gardening. I understand Vit D does accumulate in the body but obviously not long enough to last through our winters.
I had a blood test several years ago, it showed my levels low, I've felt much better since I've been tacking supliments. The link between low vitamin D levels and ill health have been know for years. It's just not the sort of thing that makes the news.
An interesting resurtch programme to be part of.
My Rheumatologist put me on vit D years ago to avoid osteoporosis.
I thought as RA patients we cannot have a live vaccine. I could not have the shingles one as that is live. We have to wait for a "dead" vaccine and from what I have read there will be one but it will probably not last as long as the live!
• in reply toGrandimose
They are not live vaccines!
It’s an attenuated live vaccine, this info sent to gps says it’s safe for those of us on immunosuppressants
assets.publishing.service.g...
Omg thanks brilliant data and advice here . my green book is out of date. Fabulous. Even carers of those immunocompromised should be offered the vaccine. That was one of my concerns!
Thank you as this provides more evidence I may need. To convince some nurse at hospital I am CEV. He’s bungled it for me. 😢
Wrong
definitely not live!!!
The vaccine for people with impaired immune systems and those on immunosuppresant medication will be the ANTIBODY vaccine and not the one passed for distribution today. If in doubt, check with your Rheumatologist. Be aware!
Funny enough I have just been reading about the different vaccines and how they work and although it’s a little confusing it does seem like that because some of us are on autoimmune drugs we may need a certain type of vaccine, maybe some clever person out there can explain to me in a simpler term than the in-depth explanation that I have been reading why .
Thanks Tangoli
Wrong vaccines make antibodies ..... and they live vaccine from pfizer will be given to those in healthcare as per my above post
The info sent to GPS states all the current vaccines are safe for those on immunosuppressants, and should be given and not delayed.
Here is the chapter of the green book, near the end is a section on immunosuppression
assets.publishing.service.g...
This chapter discusses immunosuppressants in further detail
Yea it looks like it will be fine and as I read on it seems the research shows that most of us are not really at any risk of being hospitalised than most people it actually does state that some of the drugs that we take may help with Covid 19 with the exception of prednisone
The EULAR study on patients with rheumatoid showed early data that patients on drugs such as TCZ may even have a protective value, eg if they get covid it tends to be mild . And steroids and remidisvir is given in itu as a scientifically proven treatment to help covid patients . However , dont catch it and get vaccinated
Unless you have proof and data please stop scaremongering about vaccines. Im sure you can ask NRAS and gps for advice, that's different to fake news and scaremongering.
Who are you accusing of scaremongering? History tells us it is sensible to approach new things carefully, and it is also important that we can debate things freely and express concerns without being shot down.
Yes is someone pops up with anti-vax propaganda, but I’ve not read that. Just people being normally concerned and questioning.
Many people scaremonger about vaccines , all the time . Since early days of vaccines. I said it's good to talk to the professionals who know about it .
Sure, but you said “please stop scaremongering” which suggests this is directed at someone not just a general statement that scaremongering is bad (which of course it is). I’m not reading anyone on here guilty of of that, and if you are should press the report button.
Its directed at everyone not someone. Will I put my arm out yes ... , will that not worry some people , yes,. I hope we dont scaremonger or give false information on here however unintentionally. on here. I dont mean to upset people . Let's stick to facts from NRAS and doctors and scientists on this one ..
.ps I updated this as I admit to writing it incorrectly first time.
Correct. There are four points to take into account here. The vaccines are not live. Vaccines are the only way we can get back to some kind of normality. We need people to take up the vaccine or it will all have been a waste of time. The vaccine would not be allowed to be given to anyone if it wasn't safe. Listen to the professionals and be positive. Stay safe everyone
What is happens in France HH? Do you have similar rumours about who will get on the vaccine lists over there?
EU view on the way the UK has approved this vaccine. Factual. I doubt 4 weeks would have shown anything untoward, but it shows a certain desperation..
uk.reuters.com/article/idUK...
It's not desperation our medicine independent reviewers can use section 147 . That means we are not bound by European decisions on emergency treatments. Europe dont even meet till 29 december ...so they wont start till one month later ....on the exact same data . Dont forget this data is checked daily and at each stage of vaccine development. You can even go to their meetings, its fully transparent and all meetings are on line for you to look at.
I hope I am not being accused of scaremongering. I only said what I read last week. Perhaps it was a different vaccine. If I am wrong it's brilliant news!
I updated my post and apologised. I just hope we get correct information is what I mean. And yes! that there is no scaremongering on the site
Not what you're looking for?
You may also like...
Covid vaccine
Evening everyone,im hoping someone can offer some advice from their experiences. I have just been...
COVID vaccine?
Is there anyone like me who thinks we should wait a while to see the longer affects these vaccines...
Covid Vaccine
Morning all, haven’t posted for a long time.
I am on methotrexate and folic acid, does anyone know...
COVID Vaccine
COVID vaccine 
COVID vaccine 
COVID vaccine
