Please be kind, and don't judge me! For many reasons I won't go into now, I made the difficult decision not to get vaccinated. As I am immunosuppressed on Methotrexate, prednisolone and humira, I have been keeping away from people for the past year - and it's been the hardest year of my life! I would like to hear from anyone here who is also unvaccinated and has had covid - to find out how it affected you. I don't personally know anyone who is unvaccinated and immunosuppressed, so I can't ask them to see how covid affected them. My rheumy team will give me antivirals if I get it, but I'd still like to hear of anyone's recent experience (the newer strains appear to be less severe) if you'd be kind enough to share it with me. Thank you.
Can you help?: Please be kind, and don't judge me! For... - NRAS
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hi. I can only speak to my experience. I was/am vaccinated but was on rituximab.
This caused the vaccine in my case to be ineffective. I got Covid in April 2022 . I recovered (tested negative) but still very short of breath and fevers off and on. I wound up in hospital for two months, had a cardiac arrest in hospital, severe myocarditis and was in and out of icu.
I am very lucky to still be here and only just starting to feel a bit more normal. I am looking forward to being able to start back to work soon.
Oh, I am so sorry to hear of the terrible time you had. Thanks for taking the time to reply. I'm glad that you are at last feeling a bit better.
Not the same situation but I currently have covid, I have RA and autoimmune liver disease so am on humira, pred and aziathioprine so very similar to you in terms of meds. I’ve had 6 vaccinations and am on antivirals and still feel very unwell, I’m coping, I don’t need intervention but I feel really ill. Whatever your reasons for not being vaccinated I completely respect, we all have different journeys but I don’t believe that these new strains are as mild as perhaps I thought they were. I’m in the UK so strains will be different, I don’t think we know until we catch it, there are stories of people on our meds pre vaccinations and they managed, everybody is different and covid seems to manifest itself differently in every single person. (I’d avoided it for three years). stay safe.
Thanks you. Yes everyone seems to get it differently. Everyone I know has had it here (I'm in Australia) and all of them thankfully had a very mild reaction, just like a cold. But they are all healthy and have normal immune systems. I've hidden away for so long that it is mentally harder each day, so I will have to get out more this year. I dread getting it, but hopefully I may be ok after all.
Yes we are are all very different,I live alone, am very elderly, have RA, am on Rtx & had had 4 vaccinations when I succumbed to Covid 3 months ago. I was only really poorly for a few weeks & now I am just a bit breathless & have a minor cough.But I was well enough to have minor surgery last month . I first tested positive just before Christmas when all the advised routes to get the antivirals were not up to speed - so I didn’t get them,& in fact I am now glad I missed out as two friends who did get them said they felt worse after getting them.
It was suggested I go in to hospital, but I had felt worse in the past with Flu, so I stayed home….rather than catch something worse in hospital. The only medical attention I received was a visit from two paramedics after Christmas, who agreed I didn’t need to go to hospital .
I was asked if I had a thermometer & Oximeter…& I was handed over to Covid at Home who phoned me every couple of days to check my stats & ask how I was feeling, As soon as I tested negative I was told to call them if I felt ill again, so from then I just took it easy, & luckily seem to have no longterm damage. So it’s not always a horror story if you do catch Covid….even if on paper it looks as if it could be. It’s not pleasant…but tbh as I said I had felt worse when much younger when I had Flu.
I do hope you start to feel much better very soon.
Thank you for taking the time to reply, I appreciate it.
I am vaccinated (have had 6 in total) but I am on Rituximab and studies have shown the vaccines are not very effective when on this drug, however my thinking is some protection is better than none. I’ve had covid twice November 2022 and February 2022. Both times I had antivirals very quickly but felt really ill and spent a week in bed mostly sleeping and felt pretty rough for several weeks afterwards. I didn’t end up in hospital but got pretty close - I was told if my oxygen levels dropped to 94 to call them and they’d probably take me in, they dropped to 95 several times.
However, talking to my healthy friends (who are all vaccinated) Covid seems to be very random. Some like my husband have had no symptoms at all, some had a very similar experience to me and spent a week in bed and someone else I know had very mild symptoms at the time (last summer) but a couple of weeks later developed encephalitis which the consultant is almost certain was linked to covid. What I’m trying to say is that just because one person on the same medication experienced covid one way doesn’t mean you’ll have a similar experience.
Yes, you're right - we all have a different experience. I was trying to find someone who is unvaccinated - to see what their experience was - but maybe I won't beable to find anyone! Thanks for taking the time to reply - I appreciate it.
I know several people who are unvaccinated. .. one who has had a mild go of covid.others who haven’t had it at all! I also know more people who have had real problems after vaccination.. me included.. of past conditions being triggered by the jabs. There’s all sorts of stuff coming out gradually about the benefits ., or rather non benefits of jabs…... I say ! Well done you!! I’ve refused any more. I’ve had 2 and it was after the second one my polymyalgia returned with a vengeance and I’ve been struggling with steroids ever since! Nightmare side effects!
Thank you - yes I've had family members with problems from the vaccinations and a friend of my nephew actually died after the jab - hence my hesitation. The only way I will find out how it will affect me is to catch it, of course!! But I'm doing my best not to do so. Thank you for replying.
Your friend’s experience reminds me of when I had encephalitis many many years ago, and my consultant at the time was convinced it was connected with a virus I’d had previously.I do hope she has recovered well. I was in hospital for a couple of months and it was a good year before I could go back to work.
I am on Rtx,….have had 4 vaccinations and I am wondering if I had Covid so mildly because it was 12 months since my last infusion when I caught it. All the reports I have read, indicate the further away from a Rtx infusion, the better if you do contract the virus
I am due to have an infusion next month…& as my RA is not causing problems at the moment, I am going to discuss whether to go ahead with it when I see my consultant next week…but tbh I’m not hopeful he will commit either way. …but Rtx has suited me so well for 7 years,I am reluctant to change to another drug. ….the PollyAnna in me says don’t have the infusion, but common sense tells me my RA is most likely is still controlled by the Rtx…so just have it! Decisions, Decisions!
This article seems well balanced, and is short and written in plain english. There is now much better data to be able to quantify the risks you run than there was at the start.
scientificamerican.com/arti...
Thank you!
well - I ve tested positive four times and tbh wouldn’t have bothered being boosted as opposed to vaccinated. All I’ve had since the first Moderna booster is issues culminating in hospitalisation a week after my autumn shot with arrhythmia, breathing issues and suspected clot. Then on recovery from that four bouts of covid which were manageable and then non stop flaring for two-three months so have had three steroid injections since December and only now am I finally feeling stable.
If I were you - ; I d get out there and start living -We’re a long time dead as they say.
Yes, you're right! I need to start living again - just need to get brave enough!!!
my mum had become a virtual recluse and would see no one meanwhile Dad passed away. It was only when she had her first great grandson that the penny dropped and she realised how much she was missing. Needless to say she’s had the virus and was fine and is now enjoying life at 85.
Wonderful! So glad your mum is now enjoying life again. This is what I need to try and achieve this year - some how!
go for it. Life is to be lived !
I heard this quote the other day...
"If you are afraid of dying, then you have to start living "
It hit a cord with me.
I am vaccinated, not overly protective of myself...I go out when able, and have given up wearing a mask, except when asked to, when I am compliant.
Choosing not to be vaccinated is your choice, but you do need to live your life. Enjoy.
Thank you!
Hi. I am unvaccinated. I have AS and I take cimzia, methotrexate and colchicine. I started immunosuppressants about 6 months ago. I got covid a week and a half after my very first injection of cimzia and I wont lie it absolutely sucked. I couldnt get paxlovid bc it interacts with colchicine which i take for pericarditis. And the only place i could get remdesivir was an hour away and i couldnt bring my son and had no one to watch him. Covid basically hit me in my weak points. My back and all other joints were killing me it felt like I had been hit by a truck. I also had a really intense headache for about 2 solid days. I was in bed for a few days and then could slowly spend more time up after that but it wS very draining. I also got covid a few years ago before i started immunsuppresants, it still was extremely hard on all my joints but i recovered much quicker. Its definitely a personal choice getting vaccinated and i dont judge anyone that does or does not. This was my experience and I hope it helps. Regardless of my experience I still prefer to stay unvaccinated and my rheum does not mind what so ever bc i did have my flu and pneumonia vaccine
Thank you. It's good to know that there are others like me who chose not to get vaccinated. It was a very difficult decision for me to make but in the end, I think I made the right decision. I'm scared about catching covid but hiding away from everyone has been the hardest thing I have ever done - and very mentally draining. My husband has had to stay away from people too - so he's had a hard time. I will just have to get out there and see what happens! Thank you for taking the time to reply.
yes I completely agree. I am more scared of complications from being vaccinated. i do what I can to stay healthy I eat well and exercise. I will wear a mask in an extremely crowded place but not the grocery store or anything. I know some people think that is dumb but I want to live my life. I don't mind being careful and i will not be around sick people intentionally and I know I can get sick from the stores and all that but i take my chances. It can be so draining to stay away from people. I will say i dont to out much and socialize I’m a single mom I go to work and come home but my son is in school and he doesn’t wear a mask and so far so good. I hope you can find a healthy balance you are comfortable with!!
Thank you - me too!
Hi grrrrrrrr I,m unvaccinated & been on hydroxy & preds for 2 yrs, now on day5 with methrotrexate added to the others. I,ve not yet caught covid. I still use my mask in busy places & hand gel tho, I understand it,s been hard so do feel for you! I am fortunate tho I,ve been able to spend a lot of my time in the countryside which is fairly isolated running dog boarding kennels which suited me just fine, sadly closed them last october due to flares/tiredness. And the tiredness is still with me so unable to go out much at all.
Interestingly I caught a cold in Feb & for the 1st time in yrs it I didn,t get bronchitis just an ordinary cough that didn,t need antibiotics. I think we need to bite the bullet & start getting out & about taking appropriate precautions otherwise we,ll go bonkers. Covid is here never going away & I,ve found the longer I stay isolated the more my confidence to get out dwindles, or maybe the tiredness causes it, I dont know. Try to get over your fear bit by bit, start of slowly, meet in outside not so busy places if you can. We have to live, have quality of life & if that means mixing with people so be it. I haven,t had covid I know but hopes this helps. Good luck 
Thank you - yes it did help. You are right, the longer you hide away, the harder it gets. This year I have been gradually getting out more, going to places where there are few people - outside all the time, but the other day my husband and I went for a walk along our beach and there were too many people walking past and I found I just got so anxious, I started to panic!! I felt so pathetic - being afraid of people - and I thought what has my life become that I'm too afraid to enjoy life any more. But I am determined to keep trying - and hopefully this year won't be so isolating as the last year. I hope you too can live as you want - and stay safe! Thank you for taking the time to reply.
Yo,re very welcome grrrrrrr I,ve had lots of help from this site happy to pass it on if I can You have your mask with you when you go out so put it on when you feel anxious that might help feel safer. I used to wear gloves in cold weather doused in 98% alcohol when shopping too. Another tip I found here don,t eat from sharing platters/buffets/nibbles etc but always remember you,ve got antivirals to fall back on if you do catch it. Go get your life back
In the first lockdown in 2019 I where we are we were not allowed to go more than 1km from our front door (we live in a forest!!) and one person only could go to nearest shop. So my husband went out and I stayed home.
When that lifted 6 months or so later I really struggled to go out. We used to go to our non-crowded cinema every week which has 200 seats and maybe 20 people for the films we see - so not exactly risky! Took me ages to go again.
So for the next waves of lockdowns I didn’t shield just took precautions as I realised my mental health was as important as anything else. (I am vaccinated)
Thanks. Yes it's my mental health that has suffered - never cried so much in my life!! So I will endeavour to do more.
Good morning, I haven't been vaccinated and have no intention of doing so. I was bought being told by parents (who shouldn't have been) ill health was hypochondria and attention seeking. As I told my doctor politely, if I think there is a problem I will explain the issue and ask for advice. You do what you think is right. 🐕🐈🐈
]########
Thank you.
As we all must do for our own set of health conditions and the level of medications we take.
I don’t know if we are allowed to put photos on this site!?! Just had great grandaughter here with her mum! Phew! Raises the spirits somewhat. ! You are fortunate to have a husband to hug.. or shout at! Mine died 20 years ago. Relentless rain here(uk) and I’m so pissed off with how I feel. ! Exhausted and bleary eyed! Also 2 dearest friends died 2 weeks ago and a third is in intensive care! I know at 84 what can you expect? But the fact is! I’m alive!! And I have a family and a dog!Didnt get job on Casualty as character says she’s 75!!!hardly surprising. Sorry I’ve posted a lot of this already. Booked to see Allelujah tomorrow! Sounds like a good film .
Am on 5 and a half for a while before I go down 1 mg every 6 weeks. That will bring me to 2 years since starting on 15 mgs.
Sorry to hear about your loses. Yes I am lucky to have my husband poor soul has put up with a lot with my anxiety - but we'll muddle through somehow!
I only got the 1st & 2nd vax, decided not to get any boosters. I have never ever gotten any flu shots so the 1st & 2nd COVID vax were my first jabs ever. I'm 71. Got diagnosed with RA at 62, and was shocked as I was always healthy, active tennis player, swing dancer. Am only on humira. Methotrexate and plaquenil were removed by my RA a yr ago, they seemed to stop working after 7yrs of taking them, when flares started again. Only got 1 sinus infection last winter and tested neg on COVID. Have not caught COVID or any variant yet. I live alone. I see peeps regularly who are vax and unvax. I Still play tennis and swing dance occasionally. I know peeps who are fully vax that got COVID, some with lingering effects, some with no problems.
I hope you get out and enjoy life and I hope you don't get sick.
Thank you Marsha. I was fit too until I got RA in 2019. I can't believe how pathetically old I feel now. I do go out walking early when no-one is around! But it's the socialising I miss. Two years we've had Christmas on our own instead of with family - so I'm hoping Christmas 2023 will be with others.
Irrespective of whether you're vaccinated or not, it will take time to feel comfortable being out and about, socialising, and mixing with people. I'm still working on it, and am not sure I'll ever feel the same again about the above.Good luck with it xx
Thank you. Yes it's been tough on all of us. I used to love socialising and travelling. I can't believe the person I have become - all due to fear. I will try my hardest to reverse the situation this year. I hope you can too.
I have had 3 vaccines. The original 2 plus 1 booster. I decided then that as recent strains of covid were much milder I wouldn’t have any more vaccines. I got Covid last summer after travelling and I was rough for a couple of days then began to feel better . I did take antivirals but I was already feeling better when I started them so I think I would have been fine without them. We’re all different but I decided for various reasons not to hide away and just start living normally.
Thanks - yes hiding away is SO difficult and mentally draining. Glad to hear you were ok after your covid bout.
Hello. I'm not vaccinated and caught the earliest strain. I was compromised at the time. I was given antibiotics and have been fine since with no other covid infections. I've pretty much been on and off buses and out in the public since the start. For me locking myself away would have been sheer torture, so I didn't do it.
Absolutely no judgements from me. Each individual must be free to decide on their own medical treatments.
That's great to know - thank you for replying. Yes it has been absolute torture for me and my husband. It's like being in jail. I am determined to get out there this year - but it's hard after isolating for so long - it's hard to break the habits and feel safe. But I must do it!
Just go for a walk in a park first, or something simple. You will soon get back in the swing of it. Even if you caught it there are treatments for it. Couple of my neighbours felt like you. They started off just walking round the block. I see them out all the time now. 😊
Yes I do walk around the streets and to deserted beaches etc but not around people - that's my next step!
You will do fine. A nice coffee shop perhaps? 😋
hiya
It’s difficult getting back to normal vaccinated or not.. I’m vaccinated and went back to working in the office last February.. however I feel anxious when people are coughing and spluttering everywhere and if I have an important event coming up I ask to work at home
Recently someone had Covid in the office and so I asked again to work at home the full week. I’m lucky to only have two days in the office cooped
I don’t always wear a mask but definitely do if somewhere is massively busy so like shoulder to shoulder indoor market and definitely supermarkets. Still antiback when I leave
I saw someone made a valid point of don’t share nibbles and things like that I also take my own cup to work and don’t accept drinks off anyone or make them so keeping a bit safer that way
Hope you feel better and less anxious soon xx
Thank you for taking the time to reply.
I am so happy I made the desicion NOT to take the jab! I read a lot of information on the shot, read many research papers and combed through data myself. Now finally After hearing what it is doing to immune systems I am shocked people are not outraged.
I have RA and was on Rinvoq and Hydroxychloroquine when I got Covid in Jan 2021. I was sick in bed for two weeks, mostly so tired could not stay awake, no breathing issues just very very nauseous. Slept two weeks straight and could only sip on soup broth and black tea. Recovered and back to work
Then this past Jan 2023 got it again, but did not even know I had it. Felt a little scratchy throat and my friend at work said just take the test. So I did. The two lines appeared. I said no way, take it again and Yeap two lines. Called HR and they said I had to go home for 5 days. That was cool I got 5 Paid days to stay home and do stuff around my house!
Hey look at me, 63 year old female, unvaccinated, have an autoimmune disease had original Covid and Omnicron and I’m still here!
Thank you! Your reply made me smile and cheered me up! I have a hospital procedure soon but after that I am going to get out and take more risks!
Unvaccinated here and been on several biological medication I had COVID first at the beginning of all of this and I was pretty sick for a couple of weeks and then just got it last month but had bronchitis as well so not sure which was really causing the problem but I never isolated or wore a mask and last night just took my shot of enbrel because I wanted to make sure I was well enough I was in Rituxan and had many infections so now I shall see how embrel works now
Thanks for letting me know. I guess it affects everyone differently, so I will just have to take more risks and see what happens. It's good to know others are unvaccinated too because at the beginning of the pandemic I was condemned by many for not being vaccinated. I just didn't want to add another mediation to the already large cocktail of drugs I am taking. Thank you for letting me know that you survived ok!
Your welcome get out there and live your life and expect the bests
Hi
I had covid right at the beginning. It went round part of our office. Some people were quite ill, particularly with their chests but nobody was hospitalised and how ill seemed to depend on how long you were exposed to an ill person (Viral load I guess). I was less exposed and was only mildly ill at the time with what I thought was a bit of a cold, but had no energy for about three months. In addition it gave me a dry cough which wouldn't go away, it turned out to be asthma. With hindsight I had had slight asthma since starting my auto immune conditions but I hadn't realised what it was until it worsened with covid. It was known as 'that nasty chest infection' in our office, to give you an idea of how severe it was.
I then had one vaccine, somewhat reluctantly as the assurances from the manufacturers that it induced a strong immune response did not fill me with joy. I had several bad reactions to it including a worsening of the asthma and didn't have any more vaccines.
I then had the omicron variant, which wouldn't have been helped by the vaccine I had, it was a worse experience for me than the original in terms of symptoms, like achiness, sore throat and was more like a bad cold or mild flu and I not well enough to work for about six weeks and fatigued for longer. Also it messed up my thyroid for a while causing sleep issues and what is nicknamed adrenal fatigue. Later my rheumy said I should have had been given antivirals.
I would say it is better to avoid covid if you can, but it isn't worth giving up the rest of your life to try to avoid it. It's getting milder. I hated lockdown and carried on going in to the office one day a week from the second lockdown onward to avoid depression. Keep taking the vitamin D and get your life back.
I hope this helps
Jennifer
Thanks for taking the time to reply Jennifer. Yes it does help to learn of others' experiences. I can't hide away foe ever so I will need to get out there soon.
hi I have never tested or been vaccinated ,, I had a virus" Oct 21 quite severe bedridden and doctors stated that any Flu virus can take quite a few years months depending on how severe , I am still recovering mentally and feel like Im in a permanent flare up physically but I think thats to do with the anxiety I have developed Health anxiety and hypervigilence , as it was my friend hugging me and coughing in my face that gave me the bug' but with my health conditions Im not surprised Im still slugging along I struggle if I have to go out even someone clearing their throat send me in a panic Nightmare but I pray you get some respite I really do Take care xx
Thank you for replying. Yes it has made us more anxious than 'normal' people. I have now found a very understanding GP who is helping me with my anxiety. I hope you find a way to cope too.
bless you Thankyou and thats is so good to hear take care always x
I have had no covid vaccinations at all and I knew from the very beginning that our governments around the world were and still lying to us. Prof Mike Yeadon who is ex Chief Scientific Officer for Pfizer warned the public as well as many other whistleblowing scientists and doctors etc that these covid vaccines are DANGEROUS as they have not been tested properly as covid vaccine trials are not completed until 2023 and anyone that has had a covid vaccine has been a guinea pig. Governments around the world might blame deaths on covid but the public were LIED TO as it was lack of care in poorly staffed care homes, hospitals etc whilst many staff had to quarantine and COVID VACCINES HAVE CAUSED MANY DEATHS including heart inflammation, blood clots, lung problems and loads of other problems as well as weakening your immune system so much that you catch coughs, colds, flu etc more easily than before. I personally know of people that have died from covid vaccines. Many of my friends and family that have had the vaccines have now got much weaker immune systems as several friends have currently got the flu and many others have had bad chest infections, pneumonia, lots of asthma attacks etc you name it. I`m sorry to write such a negative post but I`m only speaking the truth.
Yes there is a lot of controversy about all aspects of the pandemic - which makes it difficult for us to navigate through it all. So, we have all made our choices and I respect the choices others have made - even if they differ from mine. Some of my family have said they won't have any more boosters after having side effects. I just hope that there are not too many people that develop problems in the future - only time will tell.
I really hope as well that people have either had placebos or don`t react too badly in the future to the side effects that too many people are having. I pleaded with my family not to take the covid vaccines but like you say people have made their choices and it is their choice, you can`t stop people from taking vaccines etc only inform. There was and are loads of whistleblowers who gave out factually based, legitimate information and the reasons not to take the covid vaccines but people have free will and must make their own choices. What I found disgusting was the mass hysteria of people going around shaming people who weren`t vaccinated and masked. I had to be careful who I spoke to about my vaccine status as I was scared of even being attacked etc.
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