Lupus & covid 19 vaccine : I’m new on here and I... - LUPUS UK

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Lupus & covid 19 vaccine

AngelNS profile image
AngelNS

I’m new on here and I was just wondering if there was anyone that has SLE and has had their covid vaccine? I was suppose to have mine a while back and I’ve been holding off as I don’t know what the symptoms/ side effects from the vaccine are can anyone help me with this give me a little insight as to how long the side effects last or what I can expect? Is it worth doing etc ive had such a roughy ride the past 2 years im just terrified of doing anything that could potentially make me more poorly I’ve got to young children and I’m already limited to what I can do

Any help or advice is hugely appreciated on this ☺️

40 Replies

I have SLE and received my second jab (AZ) back in April. The only side effect I had after the first was a tender injection site. After the second I had the same plus tiredness for 48 hours.

My SLE has been well controlled for a number of years now on azathioprine and HCQ and I don't feel that anything has changed since having the vaccinations. I asked my consultant earlier in the year if I should have the vaccination and the answer was "absolutely".

Everyone is different though and only you can decide what's right for you.

AngelNS profile image
AngelNS in reply to Prunes

Thank you my rheumatologist said I should have had it a long time ago when I saw him this week but I didn’t know which one I was suppose to have or anything so I just wanted to make sure it was the right thing for me before I booked it and I can’t find any results online, I’m sure you know yourself it’s nice to finally have found somewhere to be able to speak to people going through the same thing as you are

I had mine in feb and april as I'm immunosuppressed.my 17 year old has also had his first because of me.no major issues bar the basic side effects of headache sore arm etc.for me covid would most probably be fatal so anything the vaccine might cause would be trival by comparison.

Prunes profile image
Prunes in reply to AngelNS

Yes I totally agree that this site is invaluable and we all learn from each other here.

I had no choice as to which vaccine to have; it was an AZ day that day at my surgery so that's what I was given. I didn't have any strong feelings about which one I wanted and it was some time before the AZ controversy was made public. Anyway I'm the wrong side of 40 so I would still happily have AZ!

AngelNS profile image
AngelNS in reply to Prunes

I have secondary apl with the lupus so my rheum told me I need to be careful which one I have I’ve already had DVT & PE in the past so it was really reassuring to hear other people have managed okay after having it thank you all so much

I'm also the wrong side of 40 so it was AZ for me .my youngest is under 18 so had to have Pfizer anyway.he thought his arm was going to drop off but that was all x

Hi. I have had my vaccine AZ the first one gave me sore arm and flu feeling for three days then just went as quick as it came. The second jab. I had no change at all. I was told i hsd SLE 1977 . I would say have the vaccine as it is the best way forward . 🤗

AngelNS profile image
AngelNS in reply to Snoopdoggy

Thank you so much for your help and wow you’ve been dealing with it a while then I’ve only had the diagnosis since 2015 and I’ve already forgotten what life before lupus was 😂 thank you again ☺️

Snoopdoggy profile image
Snoopdoggy in reply to AngelNS

Hi you are welcome. Hope all goes well. 🤗🤗

Hi I’ve had both my vaccinations AZ. First one was Feb and I’ve had no side effects on either jabs. The first jab I had a sore arm and just a little fuzzy in my head for a day . However the second jab no side effects whatsoever. I was diagnosed in 2009 with Lupus.I did speak about the vaccine and I was strongly advised to get it so I did . I suppose we all have choices to make and I feel I made the right one !

Hi I have SLE had both pfizer jabs. First caused lupus flare lasted 2weeks headaches fatigue muscle pain but after a days rest I managed to work through it. Second caused symptoms which lasted 48hrs . All in all I'm glad I've had it as shielding for over a year isnt fun. Again like most ppl everyone is different but having protection against a virus I'm all for it 👍

Good luck and take care with whatever you decide. 😊

AngelNS profile image
AngelNS in reply to 12derby

See this is what worries me so far everytime I’ve been given something that is suppose to help make me better or protect me it’s sent me on a long hospital stay and I mean months, my body just doesn’t seem to react very kindly at all to anything foreign coming into it I really want to get the vaccine and protect myself as I know the risk I’m at if I get covid and as you said living under shielding for so long it’s no life but neither is living in hospital especially with the covid rules they now have in place thank you for your help and I’m glad it didn’t take you too long to recover all in all

Hi AngelNSI have SLE. It is relatively well-controlled with MMF and HCQ. I had the Pfizer jab in January and April and, apart from 24 hours serious fatigue after the first one, I had no side effects not even a sore arm. I am now back at school, taking seriously sensible precautions but am at least free from 14 months of shielding and can see my grandchildren without too much anxiety.

I know everyone is different but can you lock yourself away forever?

Good luck lovely - we’re all behind you whatever you choose to do. Xx

AngelNS profile image
AngelNS in reply to Bee_E

Thank you ☺️ I know you’re right and I have to admit I think I have become that use to living inside my home that I am now a little frightened to step outside of it again i know that sounds silly but I do believe that after my last hospital stay something changed in me and I am now more scared of becoming sick I use to be so fearless but not anymore I see everything as a danger even the sunlight through my windows so I keep my curtains closed… I think I may make a post about this to talk to you all as I really don’t know how to get back to my old self but you do make a very good point and I appreciate it thank you so much ☺️

Bee_E profile image
Bee_E in reply to AngelNS

I was the same and to a degree still am. I was very shaky on my first day back in the office and very tearful. I’m not teaching for the rest of this year and avoid groups of students as far as is possible. I haven’t ventured into a shop yet. I take each first as it comes with plenty of time in between each one. Shielding was necessary but it has made us all very fearful. Knowing that you’re not alone helps a lot.

I’m really glad I found this group.

Stay safe lovely 🤗

Hi, I have had both mine and didn't experience any bad side effects, my daughter has had both her jabs as she's my carer and my bubble, I am immune suppresed so I am happy to have had both my jabs, hope it goes well for you. 🙂

Hello Agnes, I had my first jab in March it was AZ, not to scare u or anything but had neurological reaction and headaches for months which kind of prevented me from going for my second... had mri, been to specialists, the works, all seemed ok! That said I was walking yesterday and saw a vaccination center in north London stood in the queue and had my second- they did give me Pfizer cuz of my age and lupus anticoagulant positivity, so far sore arm! I would say just get it over and done with if you can, now that numbers in the UK are going up! Def better than getting COVID.. I asked two rheumatologists, specialists in the USA all agree that SLE patients don’t necessarily have contraindications for the vaccine on the contrary it’s best we take it! Good luck I know it’s a tough decision to make! Hope that was helpful! Honestly I saw a therapist to help me out w anxiety about this 😂

Lupusfairy profile image
Lupusfairy in reply to Jamzie

I have just had the same 2nd AZ vaccine having an MRI sunday , reassured you are now ok

AngelNS profile image
AngelNS in reply to Jamzie

I’m sorry you had to go through all of that but I’m glad that you turned out okay & thank you I will be speaking with my Dr again tomorrow so I think I will book it then if possible and aww did you? If that’s what it took then at least you faced it I’m still hiding like a coward and letting mine win so well done you 😂

I have SLE and have had both jags of Astra Zeneca. No problems, apart from a mildly sore arm. Good luck.

I have had both doses of Astra Zeneca. My first injection I had swollen glands a sore throat and aches and pains for about three days. The second dose I had no ill effects at all. Good luck with your decision xx

Thank you so much ☺️ xx

I have SLE and had my first dose (AZ) in February and second in April.First dose I felt rough, temperature, shivers, achy tired, headache, sore arms dizzy but it only lasted 24 hours. Second dose, I had a just a sore arm. I can reassure you that it did not affect my lupus in any way. I would be happy to do it all over again.

Everyone is different and I know of many people who have had vaccine and have all reacted differently. Some no side effects at all. Your never going to know until you get it.

Its definitely a personal decision, and please don't feel pressured by others, but for me the benefits outweigh the risks. I know what it's like to be in ICU and I don't want to go back there. Speak to your doctor as they will know what's best and can inform you on pros and cons. All the best 😁

AngelNS profile image
AngelNS in reply to Mandy8746

Thank you and I know that’s exactly what scares me ending up being admitted again the last time I was given something to make me better it almost killed me my body doesn’t react well will new things going into it so I just want to make sure I’m not going to react terribly to it thats all you have helped a lot 🥰

Hi - had both mine. First one made me feel unwell for about an hour, I rested and it passed. Second one left me light headed and a bit dizzy...nothing major from either vaccinations.

Sore arm especially from the first one as she jabbed the needle in, second was more gentle. Best advice you can get is from your own gp xxx

Hello! I have lupus and turned 47 in April. I have both shots of the Pfizer in February and March. I struggle with anxiety and was so scared that once the needle went in my arm, anything could happen, but what did happen surprised me. Immediately after my first shot was given, I broke down in tears of gratitude and relief. I had NO idea how much of a weight I had been carrying worrying about COVID. I have three boys and was constantly worried that they would bring it home and that I would end up in the hospital. Every cough that I heard when I went out for groceries put me on edge…I just didn’t realize how much worry I had been lugging around d for a year!For both shots, I was tired that evening and the next day and then everything returned to normal. No flares!

It seems like for every person you ask, you will hear a different experience. I know how hard it is but I can definitely say that I am living life far more fully with that fear of Covid off my back. Saying a little prayer for you! Best wishes!

AngelNS profile image
AngelNS in reply to Kimbelinski

It is a constant fear everytime you hear a cough or someone gets to close I’m constantly wiping down everything that comes into the house it’s so scary so I am with you 100% on that one I think making this post was definitely the best thing I’ve done it has showed me that even though everyone was different (which I knew to expect) nobody has had anything serious or dangerous from it no matter how severe their lupus is you have all brought me a little more comfort so thank you so much ☺️

Hello AngelNS

I am glad you found us and have asked this question. I know a lot of lupus patients were anxious about this issue.

I have had both vaccinations now - Pfizer for me.

My harm was sore for 3/4 days after, on both occasions. I didn't really bother me apart from when I was trying to get to sleep.

However, after my first jab I did go downhill, slowly over a few weeks and with hindsight it kicked off a lupus flare. I ended up on the sofa for the best part of 2 weeks and struggled to get a meal for my family etc.

I took a little course of steroids in the end, but was also starting a second DMARD, so that kicked in too.

I spoke to my Rheumatologist between the first and second jabs and he wanted me to go ahead with 2nd as planned, despite flare and starting another DMARD.

I run a support group and I think the majority have had their jabs. In fact I can't think of anyone who hasn't.

Like me, a few had lupus flares induced by the jab, but most had a sore arm and that was it.

To be honest, for me personally, I'd rather have a flare than take my chances with COVID-19.

But I totally understand that this is a very personal decision. Only you can make it.

Part of my decision was that I have a husband who has had to carry on going to work throughout all this and 3 teenage children. They are back at school, working part time jobs dealing with the general public and seeing their friends socially again. They want to live their lives. So I knew the only way I would feel safer and more protected was with the jab. Plus my Mum is high risk, 70 with high blood pressure.

In fact my two eldest boys, aged 17 & 16 are down for the vaccine now, as they live with me and I'm Clinically Extremely Vulnerable they are eligible.

Have you spoken to your GP or Rheumatologist about your concerns?

I hope the replies that you've had are a help.

Take a look at the LUPUS UK Guidance too. It's been updated continuously thanks to Paul and the team at Head Office.

Best wishes

Wendy

lupusuk.org.uk/covid19-vacc...

AngelNS profile image
AngelNS in reply to Wendy39

Thank you for your reply it was very helpful and everybody else’s has been too it has helped me to feel a lot more comfortable about going for the vaccine

I had the Pfizer and got mild side effects for a week. I got all of the ones listed on the leaflet but 2 paracetamol calmed them down. The 2nd jab i received none. My consultant said it was good to have side effects as it shows your immune system is responding and it's better than catching covid

Hi

I have lupus SLE and Sjogrens and am also on Levothyroxine and immunosuppressants and much more , had both my Pzifers and would say we need ours more than most !

We don’t get as much immunity as normal people but we need what protection we can get ! Having had Covid and had to be hospitalised I would not want it again !

The small side effects are nothing compared to the real thing or the threat of catching it again in my opinion anyway .

Good luck and stay safe.

AngelNS profile image
AngelNS in reply to Dcruz

Thank you you’re absolutely right it’s much better then the real thing I think my main fear is just ending up in hospital either way but I’m going to go for the vaccine I feel a lot more settled after this post ☺️

My Rhymy said yes take it. I finally went to take it. Tested positive for Covid 4 days after my first Pfizer shot. I thought it was just drainage and a sore throat. But I was positive. I quarantined myself from husband and kids. Three days after testing positive, all the covid symptoms hit me. I was down for the count. Now I will say….I didn’t cough! But you could feel the heat radiate off of my body…but no fever! So odd. Nine days after testing positive I retested just to see and I was negative but still hot. PCP did blood tests and regular tests looked good. I imagine the heat I felt was a flare on top of covid.

Absolutely get vaccinated. Why? Because nobody knows how their body will react to the infection. You could feel fine, somewhat icky, really bad or you could die. The risk of hospitalization and death among people with autoimmune disorders infected with COVID is higher. That’s what the data says and it’s a fact. Also, if you get it you can give it and you don’t know what will happen to those people.

I spent a year in lockdown. Finally got vaccinated and it took two months for me to start functioning again. It set off a massive flare. Granted I don’t have relapse/remitting, my life is a “flare”. But the vaccine made me feel much, much worse.

I’m better now after getting some simple meds from my Rheumy and my body settling down.

Would I get it again? Absolutely. A bad flare is nothing compared to a bad case of COVID or death from COVID. Also, I personally feel that it’s irresponsible not to. Why would anyone want this disease to continue to ravage the world? It’s a horrendous illness.

I’m not biased, but I do live in the country where 598,744 ppl have died. I’m friends with first responders and ICU nurses and doctors. It will only take one convo with them and some pics from the inside to convince you to deal with any side effects from the shot.

My apologies for the pushy reply, but it’s been hell. And I’ve been inside 95% of the past year and 3 months! The idea that there is any other answer but yes get the shot, get it ASAP and just plan for a flare yourself and with your doctor …

All of my immune compromised friends took the plunge, even those with diseases far more deadly than SLE. All of us are still alive and functioning. Our bigger concern is that data now shows if you’ve been on immune suppressants for your illness that the vaccine may not be as effect. I encourage everyone to read about this and talk to your doctor. In some cases an antibody test may be needed.

Please protect yourself, protect others and stop the spread. ❤️

AngelNS profile image
AngelNS in reply to katidid

Thank you so much after going through this post it made me feel a lot more settled about going for the vaccine I’m definitely going to have it and I agree with everything you’ve said 🥰

katidid profile image
katidid in reply to AngelNS

Glad I could help. Take care and stay safe 💕

I had my first one in February - the AZ - after which I felt quite poorly but in a not very specific way (and not sure if it was the vaccine or just stress). Arm v sore and had headaches. Then I had Pfizer for my second and had a very mind fever, headache and a bit of tiredness, but better than the first. My SLE is generally controlled but I've been flaring for about six months on and off because of cumulative pandemic-related over-work and stress.

katidid profile image
katidid in reply to Treetop33

A little off topic - but you’re the first person I’ve learned to have been given doses by different manufacturers. How did that come about?

I have had both AZ doses 1st one had a 3 day headache and muscle and joint pain for a day or so. But no sore arm. 2nd one arm was a bit sore for a couple of hours but nothing after that. But I have had a four day headache,stiff sore neck, nausea, dizziness and upset stomach from day 9 but I don’t think it’s jab related I think I’ve picked up a virus from my grandkids feeling a lot better today so that’s good.

Hi AngelNS, I have had both jabs with no problems whatsoever apart from a sore patch on my arm for about 24/48 hours and I have severe lupus. I felt absolutely fine and incredibly relieved as I had been "Clinically Extremely Vulnerable" for many months. My rheumatologist said that it was VERY important that I did not get Covid and was protected. I would be FAR more scared of being without my vaccine (AstraZeneca) than of any side effects from it. A close friend of mine spent two weeks on a ventilator with Covid so I am perhaps closer to the reality of getting it.

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