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is there anyone on here who has RA and has chosen NOT to have the covid vaccine for whatever reason, wether it be personal choice OR health?
After now knowing quite an alarming amount of people who have had adverse reactions to the vac (all of which have been reported to the yellow card scheme I will add) I am yet to be vaccinated. Lots think I’m crazy especially with having an AI disease… just wondering if there are any other ‘crazies’ like me?
I’m 28 and had covid for the first time in July.
Again…
Please no judgement.
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Sms94
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Hi I wouldn’t judge you at all it’s a difficult choice to make. I didn’t even have my Flu vaccination for many years as didn’t like the idea of not knowing what they were injecting into our bodies. I had Covid last August & have been very unwell indeed since ( mostly either in bed or on sofa exhausted). I’ve had no quality of life since & hubby has taken over all household responsibilities as well as working still. I had my 2 first vaccinations but was in a study group & gave blood samples. I had a letter from them to say I had no antibodies. It was a few weeks later after just stopped shielding that I caught Covid. I’ve only just realised there is a pattern & that it seems that after every vaccination ( I’ve had 5 & due another shortly) I get a lot worse then after about 3/4 months I’m feeling a bit better only just getting a bit of life back but managing to go out for coffee a few times a week that type of thing. Anyway I’m seriously considering not having the next vaccination & as have a Rheumatology appointment in October I’m hoping to discuss it then. My problem is I also have Asthma Bronchiectasis & Adelectasis all lung conditions so am a bit worried about not having it but also probably more worried about having it tbh. What a dilemma 🤷🏻♀️ X
it’s hard knowing what to do for the best isn’t it. I think all rheumatologists push for their patients to get the vaccine (mine certainly did) but I suppose it’s up to the individual and what they choose to do.
Yes I’m sure you’re right however my Rheumatologist has been quite concerned how ill I am & arranged full body CT scans to rule out any malignancy. They have come back with a 3rd lung condition but that’s another story. Maybe she will suggest leaving it a bit longer at least. We will see. Take care x
Do what you feel is best for you. I could’ve quite easily have been swayed to have it but I stuck to my guns and (for now at least) I’m glad I did.
It’s different for everyone but I now know of 3 people (whom I have met through the chronically ill Instagram community) where the vaccine has actually triggered their RA
it triggered mine. First vaccine left my fingers stiff for 4 days then went away. Second vaccine, full-blown RA. I have felt caught between a rock and a hard place regarding having more. I did have two more boosters and each triggered a horrible flare up. I had covid too. It didn’t make me very unwell but then I had had the vaccines. I don’t know what to do about fifth. It feels madness to have it but possibly madness not to. I think I probably won’t.
wow your not the first person I’ve heard say that the covid vac triggered their RA. And also see that it’s very common that those who have RA go into a flare after one! Crazy
I didn’t choose not to have them, but was ultimately unable to have the full compliment. I had two Pfizer’s and an AstraZeneca, each more than 6 months apart due to having life threatening reactions to each one, but am in the group that would have had 5 by now. As far as I’m aware, I’m the only reported case worldwide of someone unable to have any covid vaccine, and as such, no one is interested in finding out why. My last jab was in Jan, and my daughter brought covid home for the first time last week. I’m on day 9 of having symptoms and generally still feeling awful, but have finally tested negative for the first time this morning. I had IV antivirals on day 4 of symptoms, but at that point my sats were sitting at 93/94%, and my heart rate was constantly above 100bpm. I think I would have ended up extremely unwell without the antivirals, and that’s despite having had an antibody response to the vaccines I did have. If this is what happens if I get covid when I have some protection, I dread how ill I’m likely to feel/be in years to come when there’s no ability to vaccinate me further.
it’s hard because there isn’t much data surrounding the vaccines. I often see people say ‘I dread to think how bad I would’ve been without the vaccines’ but there’s just no knowing wether they’d have been worse or better without them.
I’m glad your now testing negative, hope you feel better soon x
So sorry to hear that. There have been a considerable amount of people in your condition, who have had severe reactions. There are a lot of good people out there trying to find out why, and get compensation for these people. Sir Christopher Chope has brought it up in the house.
I wouldn’t dream of judging you to be vaccinated or not is always a personal choice. I’ve had 4 to date and probably due another soon. But it’s only that my daughter who doesn’t live with us was pretty poorly whilst on a business trip abroad and getting covid that sparked me into getting my fourth as I was considering not having it. I’m clinically immune suppressed and don’t have a working immune system so don’t know if I’ve had a response to the vaccines I have had. We all make our own minds up as far as covid is concerned and I’m lucky not to have had it but then again I’ve not been able to go far due to out of control RA so my chances have been slimmer than most with regards to contact. I’m 58 so much older than you and my nieces made the same decision as you. I was told that the Delta covid would have most probably been the end of me but no one knows that for sure. Do what is best for you.
it’s your body do what you want will not judge. I am opposite to you had 5th vaccination yesterday and though been hit by fatigue after each one still standing. My hubby does not want it for his own reasons. It’s personal Choice.
You are very young & caught Covid…I am very old & I didn’t.
I have been careful all through…but I did not shield 100%….I was judged CEV…still went grocery shopping …wearing a mask,I did hand wash and I kept away from crowded indoor places. But my friends and I still visited each other’s houses and those who came to my house did not catch Covid and neither did I……plus I moved house during lock down & still avoided getting sick.
I have had 4 Covid vaccinations…& I’m fed up with being the one who has to make the decision as to whether I have another one or not.
I had bad reaction to the first two AZ jabs …reported & followed up on the Yellow Card …..then no reaction at all to the 2nd two Pfizer jabs…….I was tested & I have no antibodies.
When I asked my rheumatologist …was it worth having the fifth vaccination ….he went into the usual ‘oh yes it’s very important you have it’ speech.But he couldn’t give me any reason…apart from my age & I’m on Rituximab. Luckily I haven’t had any infection of any sort for years.
But I am waiting for a minor surgical procedure & I am also due for my next Rituximab infusion which was all arranged …and then they decided they wanted to send me to a hospital 20 miles away to have it ….so I backed out of that….but I would like to have it…as I’m now 10 months on from my 4th vaccination…..& the last infusion didn’t work - I think because I had it only 6 weeks post the vaccination….but no doctor wants to accept that reason…but has no other answer.
My GP refuses to discuss anything to do with Covid and doesn’t know anything about Rituximab & how being on the infusions entitles a patient to the anti-virals should they contract Covid.
I have been fortunate and have not had Covid - so I have booked to have my influenza vaccination next week…after which I have to wait one month before I can have the Rtx infusion. Then I have to wait three months before I can have a Covid vaccination - which if I have calculated correctly takes me to late February. Maybe more information will be available then?
I don’t think it’s worth asking my rheumy again because I will probably get the same answer - that it’s important I have number 5…but I’ve taken medical advice all the way through and I’ve got nowhere …& my RA is getting worse….so I’m going to go on my own gut feeling and not have No 5…& have the infusion in November.
That is my decision…..I’m not recommending anyone should follow suit..& I’m quite prepared for the “Oh you should’ve had Jab No5” if I do catch Covid. After all I’m the one who will get no sympathy & have to suffer in silence…or not!
it’s so complicated isn’t it. I’ve got a real phobia about injections so I had never had a flu vaccination until last year - 73 and managed to avoid both flu and flu jabs.
I have just booked my 4th covid vaccination though. I could easily have stayed a recluse and not bothered to have any of them while realising that a decision like that could be the end of me but I’ve got lots of friends who are either in the medical profession or whose families are and I sort of did it for them. My husband is now on his 5th vaccination!
I’ve never had a reaction to any of the others and haven’t had any flares either but even then I had to think twice about whether I wanted another one or not - the injection roundabout feels like it’s just going on and on. I mentioned feeling like that to friends I was having coffee with the other day and they looked at me as if I was mad to even consider not having it - there was a shocked silence to be honest!
I have another younger friend with no medical concerns at all but who is completely paranoid about covid and who has touted round and has now got all of her vaccinations booked up so I was pretty much a social pariah for even thinking about not bothering.
I quite believe that…but we read nonstop about every little symptom people think they have… that will mean they are still certain to catch Covid if they step outside without a mask…& nothing will convince them they will quite likely cope OK.
Most of my friends now think covid is like flu……..have a jab once a year, & if you get it - it won’t be too bad.
I have found doctors treating me will not give an opinion except “oh it’s really recommended you have it”, but friends who are consultants admit they don’t really know…so play it safe professionally, but on the quiet tell me to go with my gut reaction……as the problems I’ve been left with after my first two jabs will never be proven to be vaccine related….not least because J Public still doesn’t understand the intention of vaccination..that it NOT INTENDED to stop you catching the disease…just ensuring your immune system has had sight of it…so will know how to start coping if you do succumb.
I think if I get it..l’ll deal with it the best I can.I’m too old to sit waiting for the foolproof answer..I have things to do & places to go.
Actually people were told initially that if you had the jab you would not catch covid. That's what has caused the mistrust. People were bullied and coerced into having it, or called granny killers, or risked losing jobs. The gaslighting for this particular jab has been disgusting in my opinion.
People must be allowed to make their own well considered opinions, and given all the facts.
I must admit I never actually read or saw on TV anything claiming that a Covid vaccinations would stop you catching the virus…..just that vaccination could possibly mean if you were unlucky & caught Covid, if you were vaccinated- you would be likely get it less severely., but of course there is never any certainty, especially with the elderly & those who are vulnerable.
I think a lot of the problem was that Covid hit so fast that many people were so scared they misunderstood vaccines, or they were/are part of a group who don’t believe in ever having any vaccinations.
Hopefully most now understand & are able to make informed decisions for themselves.
It was particularly bad in the States, and Canada. There was a bit of it in UK with folks losing jobs if they didn't take it. This was back peddled on fairly quickly once it was understood people could still catch it and transmit. I think people forgot what was said due to all the fear mongering and lack of scientific debate.
I do hope you start to feel better soon. Awful when meds stop working. I've kind of given up for now, and will just have injections into joints.
I've had such a bad time with meds even my rheumatologist is in agreement. It sucks to be sure, but I'm not up for trying anything else yet. I think I'll get winter out of the way before I try again.
Just wanted to note, as a Canadian, we were never told the vax would prevent infection. Only that it would reduce the chance of severe illness. In Canada we did not have a covid-0 strategy. Our goal was to protect our health system which many feel is already on wobbly legs, and our economy which was strained due to a combination of infections and early-pandemic restrictions. So policies regarding vaccination in the workplace were aimed at keeping covid hospital admissions low, and protecting workplaces, both by keeping people from severe illness. Many workplaces, including the public service, did create vax policies. We have strong labour relations laws, human rights laws and unions so few people lost a job but they may have been subject to other requirements. For example at my work if you didn't have proof of vax you had to use a RAT before coming to the office (which we were doing once or twice a week at that time) and attest to the results on sign-in. We all know that RATs have mixed results, but the point is the unvaxxed did not lose their jobs, they just had to undergo a different process than the vaxxed. There were some stories in the media about folks who did lose their jobs but most of these disputes are now resolved. Most workplaces dropped vax policies in early 2022, with the worst of the crisis behind us then. Canada continues to have good uptake on vaccines and a better overall covid record than many nations (with the exception of our long term care homes which were a tragedy). Our vax policies and timelines are different than yours, as is our access to anti-virals. Btw - personally I'm pro-vax. I have had 3 so far. I am eligible for a 4th but waiting to see what happens with the bi-valents. I expect to get an annual along with my flu shot and I'm cool with that, but respect other peoples rights to make decisions for their own body - just like we are all needing to make decisions about what trts we are willing to take for our RA.
Oh, I haven’t had that hard a time…….I think my problem is my age….as a lot doctors really don’t know 100% how to treat young healthy people with any certainty….dealing with us oldies with AI & other serious diseases stretches them to the limit….so we often get the attitude “ Pat the old dear on the head - Doctor knows best” which in most cases is not true.
Luckily my rheumy has not been like that….but anything to do with 111 or 119 has just met with “Oldism”….seemingly from people who the week before had never heard of Covid,
Thankfully most of us oldies just bite the bullet, have a moan….& get on with their lives 😀
I would never judge you Sms. It's an entirely personal choice and we all have reasons for what we do or don't do. I've had 4 jabs and am due for my 5th. I probably will have it but am quite undecided. There's a whole raft of different experiences with the vaccinations. I was wholly in favour of covid vaccinations initially but now not quite so sure. My husband developed pneumonitis after his 3rd pfizer booster and was extremely ill. He's previously had a bilateral lung transplant and was doing very well until then. He is now in chronic rejection and doctors are shrugging their shoulders as to whether he should risk another because no-one can be definitely sure that the vaccination caused it. At the time there were 33 people nationwide who had developed pneumonitis after the pfizer jab. So I don't believe there is enough evidence out there for people to make an informed decision as there are too many variables depending on your individual health condition. So I'm going with my gut and therefore no help whatsoever 🙄
Hi there. Taking an active approach towards your healthcare should always be commended, and not choosing to have an unknown vaccination injected into your body should ideally always be treated with caution, as once its on your blood stream it cant be extracted.
No judgements at all from me, and no judgements to those who have had it. I've personally takem a whole heap of abuse from those who think I should have it. I chose not to have the covid vac for a few reasons. 1) I didnt like the research I did see coming out.
2) It was initially not recommended for people with autoimmune conditions.
3) I have bad reactions with drugs. Currently not even taking RA drugs as a result.
4) There have been some significant signals with the covid jab.
Personally, I think each person should weigh up the cost benefits for themselves, and not be swayed by the horrendous abuse and gaslighting we have seen coming out from the press.
its your choice. Do whatever mind say. I didnt wanted to take vaccine but family n friends was kind of forced me. I had mine both vaccine. 2 nd vaccine after within 1 week i started RA symptoms. And also catched covid too. So i personally think vaccine trigger RA. Its been a year with RA and felt like im in prison. Everyone got their own choice so please do whats your subconscious says.
Hi, I had my 3 primary vaccines before catching covid last July but am on Rtx and was in hospital for three weeks. Seemed to recover until I had the next round of Rtx in November and ever since then I can’t walk without my oxygen levels drastically falling and now on permanent home oxygen.
Caught covid again in January (from a hospital appointment) and the anti virals stopped it in its tracks. But then went on to have blood clots on the lungs, steroid induced diabetes and a Tia.
Still am left with the oxygen issue and damage to my lungs and I’m under the care of Royal Brompton now. The Dr there has told me I can’t have anymore Rtx and definitely no covid, flu or pneumonia boosters.
I’m hoping he will change his mind when I have my next appointment as my bloods show still no antibodies and feel like a sitting 🦆 and the R Arthritis is starting flare. I will get all the boosters done I think as soon as I can.
My rheumatologist who is great is insisting Rtx is the drug for me and will set it up as soon as my respiratory Dr agrees. What a situation covid/Rtx has left me in.
Everyone’s situation is different with regards to getting the vaccine and nobody should be judged for what they decide, you just do the best for your situation.
everbody has a right to say yes or no but personally I take any vaccine offered.That ensures if I get unwell I will be less poorly.I have lots of different conditions and I wouldn't want to compromise my health. Everybody has that choice. My.nieces husband is anti vax.he doesn't have any health conditions but he nearly died with it.He very nearly was put on a ventilator but slowly started to come round.It cost him his business as he has not been able to do that job again
Must admit I am thinking of not having 5th. After 1st one I did a private blood test and as on Rituximab it came back that i have no immunity to the virus. I carried on having 3 others but now thinking whats the point when it isnt giving me any immunity. I had Covid in July….wasnt allowed antivirals…it hung around for ages, but i am still here🤞. Everything is personal choice
Hi, I've never posted on here before so everything is very new to me. I had the first two covid jabs last year (Astrazeneca) Unfortunately, I'm one of the unlucky ones and had a bad reaction to it. Constantly in pain with my joints and muscles. I get a lot of swelling all over my body. I'm currently on Leflunomide which has helped with the swelling but has made me rather itchy. My rheumatologist has tried me with Hydroxychloroqiine and Sulfasalazine but I had allergic reactions with both drugs. Personally, I won't be taking any more covid jabs but the rest of my family have been fine. There's no judgement at all. It's your body and you decide what is best for you. There are a lot of people in the same predicament as me. The have the same symptoms too. I think most people have been fine taking them. Whatever your decision, I wish you the very best. Kind regards
I have RA, AS and bronchiectasis, I am 75. I have had 4 vaccinations so far and am booked for a booster. I have had no adverse reaction to these apart from a day of feeling under the weather, nor has anyone i know. As far as I am concerned this protection is brilliant and completely safe. We are fortunate it exists. Everyone is entitled to make their own decisions but why take a risk?Covid can be devastating and destroy someone’s life.
i do understand what you mean, ive had mine but im sure it has messed with my body, more stiffness etc, its such a difficult choice, best wishes Sarah x
I’ve had 5 vaccines and reacted to 3 of them. The last one I was fine Moderna, but the previous Moderna caused 2-3 week of flu like symptoms, headache, lightheaded etc. I still choose to have the vaccines as my ribs are fused, so have no chest expansion and unsuitable for ventilation. I also gave scarring on my lung as well as asthma and Atelectasis, so feel I need to do what I can to reduce the chance of serious disease. I also have adrenal insufficiency and any infection can cause a life threatening crisis. My husband is a scientist in drug discovery, so I understand the process in bringing drugs to market, and havd every confidence in the rigorous process.
I would rather have a few weeks of feeling rough, than deal with covid and not being vaccinated. We all have our own choice to make. My daughter is also 28, fit & healthy and caught covid. She was really unwell with a temp of 41, tachycardic at 160+, very short of breath etc. 3 month on she is still struggling, she had had 3 doses of the vaccine, so I dread to think how sick she would have been without it. My hubby currently has it, and feels so ill with it. His temp is 41-42 having to wash sheets daily due to heavy sweats, he is literally bedridden with it at the moment, but thankfully Sats are 94-95 so Drs are happy. I am trying to stay away, I’m on 5 immunosuppressants which doesn’t help. Good luck whatever you decide 🤗
Totally with you, I was pressured to have my 1st & 2nd, both caused massive flares.. No more for me & yes already being pressured for next, sticking to my guns this time. I take Vit D with k2 daily… when I did get COVID it was extremely mild & gone within days, I got a thorough telling off from RA nurse for not taking the antiviral.. if I was bad I would off put my hand out for it but it in my case totally unnecessary… trust yourself, your not alone in your views on this.. although my sisters in fairness do not have RA, didn’t have the vacs & both have had COVID twice!! I wish I could share more but probably wise not to re bad vac outcomes!! Stick to your guns, your not being stubborn or stupid, I admire your decisiveness.
yes biologic & MTX at the time. I’m always looking for a more natural way. I do totally understand everyone has their own thoughts & choices. I just feel it was so rushed between the 3 we know about!! I happened by chance during the pandemic to catch PMQs & one minister asked could the PM promise to get the back log of payments due to people who had bad affects from the vac & their lives had changed for the worst & could no longer work etc. I do think history will call on this one..
It is all so very difficult to decide isn't it and I bet you are no further forward in your thoughts. I have always been an advocate for vaccinations. I am, however, of a generation whose grandparents would reflect on those they lost through diseases like Measles. We forget the impact of the vaccines such as the Smallpox vaccination, (which I have had). Having said all that, after much thought, I will not be having the flu jab this year. I have had it for three consecutive years and was ill with rib intercostal inflammation. The last flu vaccine caused such devastation that I am left with permanent costochondritis and ended up on 7 months of steroids! I will, though, have my Covid jab. I think you just have to take each vaccination offer based on its merits and any known reactions. Good luck in your decision making. x
hi, i have multiple auto immune disease's, the dugs I'm on are inflixamab i.v, methotrexate sub cut along with other drugs, I've had covid twice but from the very start remained skeptical about the vaccinations thus remain unvaccinated from covid 19, i believe given recent research i have made the right choice but each to there own. Hope you're well
I’m not having another jab. I’m 33 and have reacted to the pfzier hence why I’m here. I’ve been put on beta blockers and currently awaiting to see a cardio. I’ve been told for the past 6 months it’s anxiety till I got an Apple Watch that recorded my bpm jumping to 173 and 194 and then coming straight back down. I have no underlying health condition and I have never had a problem with my heart. Unfortunately all of these stories are hidden im in a group of Fb where it’s happened to thousands of others but the media aren’t allowed to report it
yeah it’s pretty scary how censored it all is… I had my Facebook post taken down! Do you have rheumatoid arthritis? I’m so sorry you went through this x
I had covid in July, when on holiday in France. Luckily I had had 5 vaccinations, and we managed to get antivirals. I am convinced that I would not have survived without these protections, and still have aftereffects.
I will definitely be having my covid and flu injections next week, and feel very thankful that I am so lucky.
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