Hi everyone.
hope you are all well
I have had the 3 vaccines and my doctor reccomends me to take the 4th vaccine, but I don’t know how I feel about it. I know it is something which is is highly recommended, but I feel after the vaccine my health has been at it worst and I having many flare ups.
Has anyone had the same
Or what are your opinions on it.
hi I’ve had 5 vaccines now maybe even 6 can’t remember! Not really had any problems except for the side effects from the 1st vaccine and the newest one I haven’t had covid at all (touch wood) despite all my family and my husband getting it, I recently had a nasty cold which has lasted over two weeks and I still have a bit of a cough and runny nose now and again but again tested negative so hopefully the vaccines are doing the trick! I would still get another vaccine if I was offered it though but of course it’s a matter of personal choice. Hope this helps
Hi, my family members (I don't live with them) are just getting over covid. They all tested negative until 4 or 5 days into their symtpoms. Have you been testing daily? Also you may wish to get an antibody test in a few weeks to see if you had covid but just didn't have a high enough titer for the rapid tests.
Hello Turquoise1999,
My experience of Covid vaccines has been similar to yours - each of the 3 vaccines I had flared my Sjogrën’s, with each time the flare being worse than the previous one. So, once I was aware of what was happening, I chose not to have any more. Have just tried to be careful and still wear a mask in crowded situations. Trust you will be at peace about whatever decision you make.
Gemim
Like Cathy, I have had six vaccines. I think the first few gave me some fatigue. The most recent one (combined vaccine, and only a week after flu vac) was the worst - I definitely reacted to it, and it made me think that maybe I wouldn't have another. However - covid is on the rise again, I have nephritis, and I value my life - so if and when it comes around, I'll take vaccine number seven. It's a no brainer.
I've had about 5 or 6 Covid vaccines and boosters. I did have reactions - sore arm, headaches, fatigue and feeling like I was coming down with a cold. Co-codamol and extra rest helped it pass in a few days. In December 2022 I caught Covid for the first time a few days before Christmas which lasted until New Year's Eve, so not fun as I had to self-isolate and I had it really bad. I was very ill with it.
I've managed to avoid Covid for 2 years and I think the vaccines helped me avoid it for so long. If I get offered another booster I'll take it because the severity of how Covid affected my breathing was quite scary and I think I would have needed hospital treatment if I had not been vaccinated. As others have said it's a personal decision. I hope all goes well for you.
You have asked for people’s opinions and I will give mine here. Before I start - I am not against vaccines but I am against them for me. I have had dreadful side effects in the past with flu and tetanus vaccines, which have triggered an autoimmune cascade (for me). I have lupus and hashimotos with other autoimmune diseases and work very hard to keep inflammation down in my body with vitamins, food choices, no alcohol and exercise. I have had covid but no worse than my friends who had the vaccine. This is my story and I hope it helps you make an informed decision that is right for you.
Once again, I am not against vaccines and this reply has been hard to write as I do not want any negative responses.
Dear Turquoise, I have many health conditions but decided not to get any vax. Lately my cardiologist said it was the best decision to make. I was in hospital over Xmas, they put me in a Covid ward unknowingly with older people. I helped them as I was more able bodied. Lady beside me was v sick and until they took her to icu I wasn’t told about Covid. I didn’t get Covid Thank God. No vax. Just rosary each night and psalm 91. If I were you, I would not get another vax. Blessings to you +++
Hi, I’ve had 6 vaccines but still got Covid earlier this year. I wasn’t too unwell but I did have the antiviral infusion. I think I could have been really poorly if I hadn’t had the vaccines but it obviously doesn’t prevent you from contracting it.
I do suffer after each vaccine for a few days and one my heart rate shot up for a while.
It can be a difficult decision as everyone reacts differently.
Hi. I've had six vaccines and I only had a reaction to the 2nd one, not too unlike flu symptoms. I managed to stay clear of covid until last year when I caught it twice, 1st time was when I went for my 5th vaccine ( only time I'd been out in over a week) and 2nd time over Christmas, courtesy of my husband. Both times I had the antivirals which really helped.
hi I have had 5 vaccines but have decided not to have anymore as I have Lupus they have said the vaccines don’t work for us and don’t have any antibodies against it so I feel what’s the point ?? Xx
Hi, can I ask where you got the information re lupus and the vaccine please? I had my rheumatology appointment in November and my consultant questioned me to ensure that I had all my vaccines. He also reiterated that Ive to get the antivirals should I become infected. When I caught covid at Christmas and phoned for the antivirals, I was informed that it was because of the lupus that I was entitled to them and not my lung disorder .
I got messages from my GP for the 4th one too but I didn’t take it. I feel it’s not necessary just my opinion. I stay away from lots of people and only go out if needed
I have had six vaccines without side effects. Why would you not? Covid-19 is a killer, especially for those immunocompromised. 🤔
I have had 6 doses of vaccine. I did suffer with side effects as others have described but only for a week. Not the most pleasant but I will continue to accept any boosters offered as I think the extra protection from severe illness due to covid is worth the unpleasant week following vaccination. I had some mild flare up of lupus and sjorgrens after vaccinations but it didn’t last long
I had four vaccinations….Last one in June 2022.
December 2022 I got Covid…..not having any more…..
I have had 3 mrna vaccines. I have been tested and have not had covid. Each vaccines made me very ill. After the 2nd dose my lymphnodes started enlarging in my groin and armpits. After the booster....same. I was diagnosed with non Hodgkins Lymphoma. I most likely already had nHL, but for me the vaccines made it progress rapidly. I did not get the bivalent, and I have not had another booster in over 15 months. I still have a vaccine titer of over 12,000 antibodies. My mother had all her vaccines at the same time as me. Her titer had dropped from 12,000 to 4,000. So either I had a super reaction to the vaccine and produced an extreme number of antibodies that waned down to 12,000 or my body is still producing antibodies.I suggest you get a vaccine antibody titer blood test.
If I could do it again this would be the process:
Past covid infection test
Vaccine
Vaccine antibody test 1 month later
Vaccine antibody test every 4 months to see if it is increasing or waning.
Booster
Past covid infection test
Vaccine antibody test 1 month later
Vaccine antibody test every 4 months to see if it is increasing or waning.
And so on....
I think the vaccines have got better as they've evolved. Like you I had flate ups after the first 3 but vaccines 4 and 5 were much better, very little reaction at all. I had no reaction at all to the 6th vaccine. I got Covid for the first time in January and it was no worse than a cold. I put this down to the 6 vaccines doing their job. My healthy friend got Covid at the same time and is still suffering.
I have had much more often and worse flares since the covid vaccine (have had 2 total) my blood work went off the charts for the worse after the second one. Just speaking the truth...
The last vaccine I had has given me palpitations..I thought it was side effect and would wear off but it keeps happening sporadically. I had covid in October n my symptoms have escalated n I'm finding it hard to manage so I'm taking a break from it all. I feel that bombarding our already whacky immune systems with vaccines aren't doing me any favours as I do manage to fight off infection fairly well. Evusheld is no longer effective so has been declined by NICE and we're all just left having to make these tough decisions 😔 As I mentioned I had Covid in October n that was from my husband who caught covid after going for his booster!! I don't trust the system n feel I'm more at risk from going to get the booster in the first place. I've had four jabs ..2 astra zenica ,I Pfizer and then a Moderna (which caused the palpitations side effect)
I like you have a similar experience with Sjögrens flares after vaccines. I also had an allergic reaction to the 1st 2 vaccines which were AstraZeneca. I got rashes on my body which were sore , felt sick and I’ll for a week in each case. I do not have a good side effect profile in any case , so my gp decided to get advice before my booster. The decision was to have the pzfizer booster, so I had it. It made me feel really I’ll, shingles spots ( I’ve had it before) started to appear then died back.
On the 5 th day after the booster I caught Covid, probably a coincidence, but having avoided catching it for 2 yrs, in spite of being exposed, it seemed a bit ironic that after the 3rd vaccine I caught it. I was so low already with the booster, it took me ages to recover.
The only 4 th booster being offered was Moderna, which was ruled out by my gp due to side effects, so until that policy changes I will not revisit a vaccine . I hope that a non. mRNA vaccine will be licensed suitable for those who react to others. I caught Covid again 5 months later and then got shingles after it, but I can honestly say that it took me less time to get over that than each vaccine I had.
I have been lucky in that I am not high risk re Covid outcomes. I do believe in vaccines generally, But there is nothing in the UK is available in vaccines for patients like me. Most people just think I am being very fussy or an anti Vaxer, so not much empathy out there!!
Hi-
It might be worth exploring the effect of mRNA vaccines vs the died virus vaccines on auto immune conditions. Personally, I felt my third dose of mRNA vaccine triggered further rashes, high fatigue and joint issues. Not sure if anyone had a similar experience. All best anyway.
I have had 6 vaccines (2 AstraZeneca, 4 Pfizer). My arm was a little sore after the Pfizer vaccines but otherwise I had no reactions. I caught covid in November and had incredibly mild symptoms. I had a tickly throat and coughed about twice a day. The vaccine won’t stop you catching covid but should prevent serious illness.
I have had 5 , didn't get informed about 6th one, reacted badly to all of them but I do value my life and if offered will definitely have another x
I normally keep my experience to myself since this particular virus and vaccine have very different effects from person to person. But since you ask I am sharing my experince for the first time. I took the 2 vaccines and 1 booster as soon as I received the invitation without hesitation. I was terrified of getting covid. Each vaccine resulted in more and stronger side effects that lasted for longer each time. The first vaccine, I just felt sleepy and intense pain in my arm for a day or so; with the second vaccine I had tiredness, very strange rashes in my torso and legs that would come and go for about 2 weeks, I also had a skin burning sensation in my legs. With the third I had some difficulties focusing that evening, felt terribly tired and sleepy for weeks, had petechiae in my mouth and the blood test showed low hemoglobin levels. 5 months after the booster I got Covid. Backpain, fever, cough, short breath and sore throat lasted a few days, what came next just got worse as weeks went by: brain fog, mental confusion, extreme tiredness, muscle weakness, dizzyness, extreme cold sensation from within, swollen tongue, headaches, etc; 3 months after my first positive test I ended up in hospital with all that as well as petechiae and bruises in my face, mouth and limbs and a platelet count of 1000. I have been diagnosed with lupus; I was very healthy and mentally and physically active before this ordeal. It is not possible to know whether the virus alone or the vaccines followed by the virus triggered the lupus, or whether my reaction to covid would have been better or worse without the 3 vaccines. With hindsight, I would probably not have taken the booster. I have decided with the advice of my Dr, not to take more covid vaccines at least for a while and definitely not until my body continues in overdrive; but again this is my personal decision based on my very personal experience. I am not a healthcare expert so I cannot stress enough that I do not advocate for anyone else not to get vaccinated or otherwise.
Similar to me possibly..🤔
My timeline for diagnosis coincides in part with all this.
Symptoms I had prior to covid were only arthritis, POTS and some peripheral neuropathy.
I had covid March 2020 and then covid vaccinations
Photosensivity and dryness, kidney and eye issues happened following covid and the vaccination.
I was very fit and well before all this...
Think my immune system behaved differently in relation to covid.
Then covid and maybe the vaccine caused a progression in symptoms.
Can't get my head around it, and there is not much in the literature yet.
Hi
I firstly would like to say I’m pro-vaccination. I caught Covid early in 2020 and it was truly awful. I’d never been so ill. I had two offered Astra Zeneca vaccines and have only been offered one further booster in December 2022. I’ve still not taken it. I had a bad flare after each jab, both lasting approx 2 months then I was constantly low level flaring. The jab also caused me to have reactive arthritis amongst other new symptoms which have still not gone away. My NHS rheumatologist said this has also been the case with other of her AI patients.
I caught Covid in July 2022 whilst wearing an N95 mask outdoors - my only trip outside and no one had been in my home for 14 days prior, there was no other way I could have caught it. I was so very ill again, no easier for me second time round. Wasn’t eligible for antivirals. Since catching it I’ve been low level continuously flaring with bigger flares on top. I’m still struggling. I’m trying to get myself stable enough to have the jab. Waiting for guidance from my Rheumatologist when I next get to see her. The jabs made me worse each time but Covid was hellish for me on both occasions.
I wish I had an answer for you. I do think we are all very different, depending on our type of Lupus, our individual blood results, our medication, whether our condition is stable at the time of the jab. I don’t think the medics can give us an individualised answer as most research is based on the average population and not us very special people. ✨
Hi Turquoise
I'm still having chest pain following my June Pfizer jab. I have discussed with GP and consultant and am confident it will go with rest but I never want to have this happen again. My earlier Pfizer jabs were fine. I had covid in March 2020.
I think most people fare okay, so having the vaccine is best.
Once you get a bad reaction though - I think it is important to consider everything.
I have found some papers on various things so include links here for others who have had bad reactions.
This "Australian patient guidance booklet on myo/pericarditis after C19 vaccines" I have found very helpful.
health.gov.au/sites/default...
Recent papers include:
For heart:
Cardiovascular complications of COVID-19 vaccines: A review of case-report and case-series studies
ncbi.nlm.nih.gov/pmc/articl...
COVID-19 Vaccine–Related Myocardial and Pericardial Inflammation
ncbi.nlm.nih.gov/pmc/articl...
For eyes - Things like uveitis
Ocular manifestations following COVID-19 vaccination
joii-journal.springeropen.c....
For kidneys:
Kidney injury associated with COVID-19 infection and vaccine: A narrative review
Has anyone had a lupus flare after having the Covid vaccine?
