Hi all newby here, just been diagnosed with RA. Am wondering if anybody can tell me how can my immune system react properly to a vax when it is not working properly? RA is an auto immune diseaseso surely there`s a risk it may be overwhelmed if challenged with the vax? At the moment I`m not being pressured to have it but feel it`s only a matter of time before I will be. Both my sister & aunty had RA, I`d say I`ve been undiagnosed with it for about 5/6 yrs just got on with achy hands & feet till my hands became swollen & stiif before xmas. Look forward to any explainations thanks.
RA & Vaccine: Hi all newby here, just been diagnosed... - NRAS
The best place to find accurate answers is on the NRAS website:nras.org.uk/resource/freque...
The treatment for Rheumatoid Disease is designed to bring the over-active immune system (or part of it that is overacting) under control.
Having the vaccine will protect you from developing severe Covid 19 illness. And also protect others from catching it from you.
My consultant enforced to me, the importance of getting the vaccine! I was surprised she felt she had to, she went onto explain that there those who were refusing it!! To be honest this shocked me, if the vaccine was not safe to those with auto immune diseases we would not be made a priority to others in taking it. I for one am extremely pleased I've been offered it and I'm looking forward to my second one! Suffering from RA is bad enough I certainly would not take the risk of catching Covid.
Hi thxs for your input. I`ve read the link but not really getting a definitave answer. I`m on steroids which are aimed at getting my immune system under control but they won`t mend it or cure it & I`m already staring the reducing dose of them last week. I`m also on hydroxychoroquine & my understanding of them is they alter the ra disease again by trying to normalise the immune system thats attcking my joints. So how will my immune system react to the vaccine even tho I`m taking drugs to suppress it but with the intention to get off the steroids asap & It`s always going to be faulty?? Soory should mention I also have allergic asthma & severe allergy to sunflower of all things lol
Use the magnifying glass above to search as there are lots of replies. Best chat to your doctor about your own situation but surely some protection is better than none.
We will all get according to clinical trials a good level of immunity. With RA we are nowhere near as immunosupressed as those say in cancer therapies. Over 80s normally dont have the best immune responses but even they are getting 70 to 90 % protection.
But the main point for me is its 100% after vaccine prevents death if you did catch covid and very little to no chance of getting severe illness or hospitalised and that's in real life stage 4 trials with 2 million people in Scotland.
I think that's hugely positive.
There is a trial going on just now run by oxford on actual numbers of protection in auto immune., cancers , ra patients and results will be out end of the year. Until then , nd most of the population us vaccinated, get yourself vaccinated and continue with the distancing, hand gel, ventilation, masks .😍
Hi thxs for replying. It`s been deferred for now as was unwell when they offered 1st vax, Dr said wait. Do`nt think I`m explaining myself properly sorry! Brain is too tired need a snooze, making silly spelling mistakes, now I`ve overtaxed it by thinking too much u know it`s like this fog in my head back later when it clears.
Do take a look at the information provided to our RA clinicians. I think it will reassure you.
Unfortunately there is no definitive answer to your questions yet. The Octave study is working on it but only started recently. You are correct that we may not achieve the same high level of immunity from the vaccinations as non RA sufferers but we are being encouraged to have them anyway. I'm really pleased I will be having my second AZ vaccination tomorrow.
Very interesting read, thanks, was thinking no real answer to question.
There is no real answer until the octave study comes through the only definite is if you dont have the vaccine when classed as clinically vulnerable you are at higher risk of dying. It doesnt matter if your 90 % or 70 % it's better than none and personally if you watch John Campbell videos on you tube his examination of data shows we will get good protection. Dont overthink it, let the scientists do that. They say get vaccine. Follow rules . Thats it in a nutshell. If they think we need boosters they will tell us but you need that first vaccine. There have been no vaccine related deaths in the autoimmune group, only in the unvaccinated group.
Go rest up and feel better xx
Your immune system is an immensely complex thing - it is not that having RA means it doesn’t work. It does work perfectly well for most things, there is just an element of it, out of hundreds of elements, that is out of whack. And you obviously have a couple of other tiny elements out of whack with the allergies you have.
And the drugs we take modify it, but again only a little. If they really suppressed our immune system we would have to live in plastic bubbles.
We have the potential to create millions of different antibodies (yes millions!) and at any one time will have loads active in us. So we are perfectly capable of producing the specific antibodies needed to tackle the covid virus. And the vaccine may not stimulate us to produce as many as other people, but we only need some to stop us dying.
So I really wouldn’t feel that this vaccine will overwhelm your immune system. More likely is that your immune system will mainly ignore it and not respond as much as it could.
I always like your positivity as I’m 99 per cent glass half full girl as opposed to half empty!
Thanks,...sorry I`ve not explained myself too well at all due to this tiredness but I do have a good basic knowledge/understanding of the immune system maybe I`ll ask another time when I can explain better what I mean.
No. You are only mildly suppressed on steroids and hydrochlorquine. They only dampen down inflammation is how they work so having controlled ra is safer for any illness than not being controlled. So no you will not have to hide away in a bubble forever, I dont in normal times. I sort of careful and dont go near people with cold, keep my hands clean etc and ivd been fine. We are not immuno suppressed much as those with say cancer and also you get your bloods done at check ups? Thars when they check your white cell levels dont go low, if they did theres plenty they can do about it, usually I just miss some doses of my RA drugs, if told to do it by the doctors, obviously not steroids as they have to be tapered as instructed by your doctor. Its overwhelming at first but you will get used to it .
Put it this way, I have RA osteoarthritis and Asma. 6 weeks ago I had the covid vaccine and so did my husbund, 4 weeks ago my husbund contacted Covid but his syptoms were very mild guess what? I didn't!! He does not suffer from any auto immune diseases and is very healthy. Try to stop worrying, our immune systems are maybe stronger than you think!
Are you newly diagnosed? Just on treatment? You sound fatigued and dont know about what is out there for you. We are here to chaftanytime x it's very hard , even worse during a pandemic. Xx
Yes just diagnosed 3 weeks ago started hydrochlorquine 9 dys ago but been on steroids for 4wks, still on them but tapering them off. The tiredness gets me, makes me brain dead!! lol Dr has said hold off on vax for now. Going to have another blood test on Tuesday then another 2 wks later. I have high ferretin levels because apparently my body is unable to utilise the iron & is storing it. He is going to keep in touch with me re blood tests. Can`t wait to just feel normal again!!
Ah, thought so . You sound like me at the beginning. Exhausted, sore, brain fog .if you look on nras.org.uk theres loads of advice about being newly diagnosed and coping with RA. Dont worry too much about " immunosuppression" etc , just normal hygiene and covid rules will be fine. The vaccine hasnt been shown to cause us harm, just good as it stops us dying, so when your doc says you can go for it . Good luck with your iron tests next week xxx we are here if you need us . I'm sure you have lots of questions and we are here if you need xx sending lots of love x
Hi there, high ferritin levels, can indicate high levels of inflammation associated with RA. There is also a condition called genetic Haemochromatosis where you absorb more iron than the body needs from food. This condition can cause joint problems too, along with lots of other serious health problems if you are depositing iron in your organs. Has your GP arranged a blood test for the Haemochromatosis gene. Please ask him to do this as a matter of urgency. I have both RA and genetic Haemochromatosis. My RA was diagnosed first, later when my Haemochromatosis started giving me symptoms these were put down to the RA. If you have Haemochromatosis it is vital that you receive treatment to reduce your ferritin levels in you body. It can be easily controlled but often missed in diagnosis. Check out the website for Haemochromatosis UK. I would be interested to hear how you get on, I know you are suffering with fatigue but please please do get the blood tests for Haemochromatosis . You need rid of that iron that is being deposited round your body. I can’t emphasise this too much and if you have it, it is easily treatable. If you are diagnosed with Haemo there is an excellent FB group full of excellent advise just like this group for folk with RD. I can let you have the contact details. Best wishes. Mall
Thank you, I am having another blood test on Tuesday, I think turn around for results r 5/6 working dys but Easter next week will be half day on Thursday resulta after easter now. Dr usually emails me or rings. I will ask him about it. I did see this when googled it didn`t know u could have both tho!! Thank u again I wont forget. He did tell me no more vits/supplements few wks ago so stopped them. Avoiding high iron meat/fortified foods for now being honest appetite not great so no real hardship lol
A few food tips, don’t worry to much about your diet, in general eat as normal. Vitamin C is a big culprit in increasing iron absorption so avoid drinking fruit juice eating oranges with meals. Tea helps suppress absorption so a cup of tea with meals is good. If your ferritin is very high don’t eat shellfish, molluscs, they may carry a toxin which interacts with iron and can make you very ill. Don’t take any vitamin supplements that contain vit C or iron and avoid the breakfast cereals fortified with iron. It sounds like your GP is on the ball. It can take about 5 weeks for results from a genetic blood test. He might be doing a Transferin Saturation test prior to a genetic test, you can’t have food for so many hours before this one. It is a good indicator as to whether a gene test is needed. And yes you can have both conditions , I am living proof of that. 😂😂
No one can tell you how your body will react to something. It is such an individual thing. I asked the hospital immunologist about adverse reactions in the near or distant future of a couple of vaccines that he had mentioned in the consultation. He confirmed that some people can, and do, have very severe adverse reactions and that he could not guarantee that I would not be one of those people. I had an adverse reaction to a vaccine several years ago, and even more recently to a Vit B12 shot - not necessarily to the actual B12 in the shot... but more likely a reaction to whatever else was in the liquid.
In other words, it would be inappropriate and foolish to give an assurance to someone else, regarding what will/won't happen to their body.
However you know you have allergies and as such you would have yours under medical supervision .its extremely rare to have reactions to vaccine, extremely.
As I said, I asked the immunologist and I discussed the near AND distant future reactions of vaccines. So someone being present for just 15 mins after an injection doesn't exactly put my mind at rest. If there's a noticeable reaction within mins, in all likelihood an unseen internal reaction of some sort may continue long after - and that's what I and the immunologist were discussing.
The following is from the online VAERS in the USA. The UK equivalent is the online Yellow Card system. Only a small number (said to be about 1% or so) of people know about VAERS and Yellow Card. Therefore, only a tiny percentage of adverse events are recorded. If everyone knew about these online sites, the sites would be used a great deal more.
I said under medical supervision if you have allergies, not the general wait post vaccine. That is going into a hospital unit with CPR equipment. However all vaccinators are trained in dealing with allergies and it IS extremely rare. I think scaring people about vaccine safety is wrong. The covid vaccines have all been passed , peer reviewed, still under and are safe and the only treatment for covid .
Excuse me? 🤔
"Scaring people.. is wrong"? 🤔
I mentioned the online VAERS and Yellow Card systems - both of which are the OFFICIAL recording systems of the health authorities in USA and UK!! 🙄
I really don`t think they are that rare. I think they are under reported. While I am no expert I do like to learn about what I have & try to make informed decisions for myself. I watched my sister die 17 yrs ago from RA aged 64yrs, bed bound for the last 3 yrs of her life & my aunty a few yrs before her. My sister had new joints made from titanium, then have them removed because they caused allegic reactions.
Yes this is true but my worry is the vaccine triggering anything new that may only show later.
You're more likely to be hit by a car tomorrow than experience repercussions of the vaccine later on! And lets face I think we can all agree we are all too busy coping and managing with the disease of RA and the plethora of medications we are on and their unwanted side effects than the effects of a covid vaccination later on in life.
If you know how for example flu vaccines work, they dont cause long term problems. The covid vaccines are actually not new, they are just basic flu type vsccines that have been used for years with the covid inactivated particles in. So I would be very reassured that they are long term safe as in effect they've already bern in use long term. We tweak the flu vaccine every year. That's basically what they have done. I'm telling you this to try and reassure you but I think get this RA controlled and restup as much as possible and follow your doctors advice 😍
Thank you, yes this is my concern. My interest was from a number of yrs ago & was hoping there may be new developments now.
I can't, I won't, and I don't... tell people what to do with/to their own body. I only suggest that, if poss, each person conducts their own prior research. I provided a couple of links that should help form a broader perspective. But how much research do you do when researching a washing machine, a cooker, a car, etc? Maybe consider applying that same level of interest or concern to suggested medical interventions. Good luck. 🖖🏻
Thank you for the links. I do like to try make my own informed decisions, at least when this brain fog lifts I`ll be better able to think clearer!!! lol
Big hugs. Sadly we all know the brain fog only too well. I am one year post diagnosis. It’s taken my knees mainly and brain fog and fatigue are regular visitors. If it helps I had an adverse reaction to B12, spinal block and have a few allergies eczema severe asthma and highly allergic to perfumes creams and so on. I had the AZ without any issue whatsoever (both doses) I’m on high dose steroid (30mg) MXT adalimumab and various pain relief. None of which are doing the trick as yet so am still in the original ‘flare’ from diagnosis. New treatment starting on Monday. The vac certainly hasn’t made my condition any worse. Having spent my life living with various allergies I can tell you just because we react to something does not mean lasting issues triggered in the body. Most of the time no intervention is needed ... sometimes antihistamine and sometimes more. Either way there are professionals trained to help with all the equipment needed at these centres on standby. With all the vast numbers vaccinated the people who have had adverse reactions is incredibly small. For me having this vacc is like having the flu vacc every year. I have done this for the last 10 years and it keeps and kept me out of hospital. (Asthma) The Covid vaccine will prevent me from dying if I catch Covid. For me ... simple decision. Good luck with it all and with your treatment. Some great advice has been given. Please don’t believe what you read in the press. Do search the NRAS site and you’ve been given an couple of links to parts of the site from old timer allanah and Lolabridge. They have way more experience of this than me 🍀🥰
I think the bigger picture here is, as we know, Covid has killed thousands and thousands of people! My daughter s partner at the age of 35 died of Covid. I am totally reassured that the vaccination will save many lives. Irrespective of what we individually suffer from as none of us has a monopoly on I'll health, I, myself, have total faith in living a more normal way of life by putting my trust in the vaccine..
My post is not about for or anti vax it`s about effects on a faulty immune system & although my brain feels like it is dead at times I haven`t always been like this. I am usually capable of rational thinking & making informed decisions & was hoping for info not a debate nor to have opinions belittled. My mum had polimyalgia & when I asked her rheumatologist about her yearly flu vax he said no & she didn`t have any more, more`s the pity I never thought to ask why. Anyway lets respect each others opinions/choices & try to live our best with this nasty disease
My friend's father felt dreadful each year after being injected with the flu vax. And yet, despite this, the GP would, incredibly, pressure him to have the flu vax again the next year. On the last occasion that he had the flu vax, he rtnd home from the GP practice, again feeling dreadful, and again swearing he'd never acquiesce and have it again. And he never did. He died later, that same day.
And was it conclusively proven that the vaccine had anything to do with this, or just a very sad coincidence? Presumably if a friend of a friend you are not privy to his full medical history either.
She called the paramedics and informed them of how he felt after the flu vax that day, and how unwell he felt each time he'd had it. The paramedics confirmed that they know of a lot of elderly people who are unwell, and even die, after getting the flu vax.
We are all different. And no one can guarantee how another person's body will be impacted or impaired by a medical intervention. But it's great that we can each have, and can each share, our differing points of view.
No we can’t guarantee anything for anyone - not even ourselves.
The reason I ask is that there was a big fuss here as a few elderly people died after having their vaccine. I think about 5. Anyway after much investigation the authorities all seemed confident that it wasn’t as a direct cause of the vaccine. They all had complex medical histories and were frail as well.
It was a lot more than 5. And why would they inject those who are so elderly and frail, with something that further comprises their immune systems? Haven't they heard of Vit C, Vit D3, and Zinc? And without autopsies, the "authorities" cannot say what led to the speedy death of those elderly & frail individuals - not unless they have a crystal ball. Added to that, in the interests of fairness, how come when someone dies of virtually anything several weeks after a "positive" covid test (i.e. the very unreliable PCR swab test), it is noted as a covid death? In the interests of fairness, surely the same crystal ball principle should be applied, and we should be told that "after much investigation, we the authorities, are confident that their death wasn't as a direct cause of covid. It was because they all had complex medical histories and were frail as well."? 🤔 And even when someone had a negative PCR swab test, ir even no test and no result at all, they were still noted as a covid death.
How do you know the vaccine compromises one’s immune system? It does what vaccines do...stimulates T-cells to produce antibodies like many natural events stimulate thousands of other antibodies. I don’t see that as compromising an immune system.
(I won’t click on Daily Mail or groups that Toby Young is associated with - personal choice).
(Oh, and you say we shouldn’t advise people - but aren’t you doing that with Zinc? For some people on some drugs, and with some conditions this really isn’t a good thing to do)
No problem for covid vax .... only live virus vaccines are a problem for us. I have just had my first AZ shot ... no adverse effects at all
Hi I have had my vaccine, I was concerned as I take methotrexate. I was encouraged by my GP to have the vaccine, since having the vaccine I do feel safer. The side-effects was a pain in my arm and a headache on and off for a few days. I would encourage anyone to to have the vaccine .
Have you got an RA nurse practitioner that is looking after you? She is the best person to ask.I read up a lot and in the end she persuaded me to have it.
She asked me to halt MTX for two weeks after the vaccine to give it chance to build up immunity to Covid. I am on the second week now and my joints are telling me to have the MTX but managing on painkillers.
Hi I have had R A for 7 years I had the astra Zeneca 1st vaccine injection 3 weeks ago no side effects although my fatigue do feel slightly higher but I’ve been having sleep problems too so could be that. I’d rather have at least some immunity to this horrible virus.
Hi my rheumatology doctor told me too stop taking my medication for 2wks on my first vaccine but would be fine for the second one, I was poorly like I had flu for 24hrs but then went back to my normal pain, I've been the same as you took them 4yrs and mine is in my hands shoulders and feet, so it's definitely worth getting it as we have to have the flu jab every year it's just the live vaccine we have to be careful with.
To get back to your original post as I said above feel better soon .
Hi, Chrt!I haven’t had a flare in a while but was worried that the shots could bring one on. I had my second Pfizer shot on Thursday. No problems. Slight headache Friday. I did take Tylenol before going to bed Thursday night to hopefully ward off any pains. I am 75 and in the US. Good luck. If you do have any pains, I hope they only last a day. My son and his wife had that experience and were fine afterwards but they don’t have our problems. God bless.
Hi Chrt. Sorry you have been diagnosed with RA. I have RA and other illnesses on top of it and dealing with them over the years, and I’ve got to the point now of really deciding, enough worry, enough what if’s etc.
I don’t want to be alarming,but dealing with these issues for so long I forgot to live! It seems to take over our lives we can’t see past our fears. So now, with RA and this vax? For me is’ NO’, If i come this far and survived I sure as heck am not going to be encouraged to bend to the fear of this medical stuff that they shove into us that might fix the current problems!
I can live with what I already have to deal with, and i will not be forced to ad more uncertain poison on top because some health official expects us to obey their right decision.
All up, It’s my life,my body and nobody dictates to me what might be effective because the thrive on five minutes of fame that they go down in the book of achievements.
So please,don’t take me as a ratbag, but just someone who loves life regardless of my illness.
I wish you the best in whatever decision you make. But just one thing I ask? Make your life meaningful? don’t give up on yourself even if you have the worst diagnosis,just live the way you choose,don’t let anyone tell you otherwise. Do right by you. God bless
Thank you. I`m still in a sort of confused state but realising I have to come to terms with it. I think I`ve led a fairly meaningful life for me. I run my own dog boarding kennels & involved with fostering rescued dogs & helping when I can & am realising slowly I can continue doing it, don`t have to give it all up. I have to try live my life as I`ve always done, usualy taking the bull by the horns & working things out later! I`m 67 now so not naive enough to know I may have to make adjustments & tweek things somewhat but where there`s a will there`s a way eh?You r very right I do have to right by me & go with things I learned thru life & my dogs more than 20yrs ago. It was about immune systems & vaxs, food & nutrition, genetics & the environment. Too long to go into nowit`s something thats been impossible to forget but never in a million yrs thought I`d have to draw on for myself lol. My brain feels battered, before the dignosis docs advised a colonoscopy because 1st blood results showed negative for RA., low iron(you know where that was going) but was OK, so then further bloods were positive I do have it. I told him no, I`m too old thats wrong hehehe
So here we all are & what can we do about?
Be the best we can with what we know & enjoy a quality of life to the best of our abilities.
I`ll keep trying Chrstal thanks again for your post much appreciated ps hope thes meds kick in really soon!!!!
Owdidoo the stalwarts on here have given great suggestions.My penny worth is I always discuss with my professionals my concerns, do you have an RA team you can call to discuss things with?
We all have individual RA stories which is why no one reaction by one of us will tell you much.
Yes do tell them about your allergy to sunflower oil , though reactions are to the ingredients in the vaccine which I would imagine hasn't sunflower oil in it?
I don't think you can have it while on steroids as it reduces the effectiveness.
Lastly I'd rather cope with reactions to the vaccine than to dealing with Covid.
I have had my vaccination and look forward to my second one due in May
You should definitly make sure you talk to your rheumatologist. There are certain medications that you'll want to skip a dose (or possibly two) around the time that you get your vaccine since certain RA meds actually stop immune system responses. An RN I spoke with felt pretty strongly that methotrexate should be skipped both the week before and week after the vaccine. My rhematologist felt that only the dose after a vaccine needs to be skipped since the dose prior to the vaccine was 5 days prior. But talk to your doctor. Across the board, all medical professionals I spoke with explained that it is incredibly important for me to get the vaccine as soon as it is offered.
I'm feeling a bit of an odd ball. I'm on Hydroxychloroquine pills for my R.A and its managing it well. I still get problems in my hands but not enough to stop normal living (whatever that is). I had the Astra-zeneka jab 2 weeks ago. Felt rough for 4 days, but since then absolutely no R.A symptoms what so ever. Inflammation in knuckles has gone, no pain anywhere....I wake up every morning expecting the feeling of broken fingers - like i have done everyday since June 2019- but nothing ! not a murmur. I've been working as normal (carpenter,/joiner) and its the best I've felt in 2 years. For some reason everything has subsided. Coincidence - maybe, but so far, so good.
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