Updated with more personal stories: 13th April 2021

The biggest vaccine campaign in NHS history has kicked off, with Pfizer/BioNTech and Oxford-AstraZeneca COVID-19 vaccinations being administered following their clinical approval. Like all medicines, vaccines can cause side effects, although many people don't get any side effects at all. But what does it feel like to receive the vaccine when you have Addison's or adrenal insufficiency?

Since the roll out of the vaccines in the UK, we’ve been asking you to share your experiences of being vaccinated, so that we can share these real life experiences to reassure others. Whilst most people with Addison's and adrenal insufficiency are in vaccination priority group 6 - some of our members have already received the vaccine due to being front line health workers, their age, or because their Doctors have asked them to shield based on other conditions or other risk factors. 

How does the COVID-19 vaccine make you feel?

COVID-19 vaccines work by training the immune system, so when we encounter the virus for real we’re able to fight it off. 

This ‘training’ response can feel a bit like the effects we get when we’re fighting off a real infection. The vast majority of side effects are mild and short-term. The most common are pain at the injection site, tiredness, headache, muscle pain or chills. Don’t worry if your arm starts to hurt the next day, this isn’t a cause for concern and is usually gone within a day or two.

It's different for everyone, as shown in the experiences shared by ADSHG members below. But if you were to feel unwell after vaccination, do increase your glucocorticoid, take paracetamol to help reduce your symptoms making them easier to manage and drink plenty of fluids as you would normally for sick day rules

Side effects are a sign that your immune system is kicking into action to protect you from COVID-19 - this is not a COVID-19 illness and the vaccine can’t give you coronavirus. At the same time, don’t worry if you don’t experience any of these effects after your vaccine. Your immune system will still be learning to respond to the virus

Should I increase my glucocorticoid dose before having the COVID-19 vaccine?

Our Addison's Clinical Advisory Panel (CAP) and Society for Endocrinology have advised that there is no need to routinely increase glucocorticoid dose at the time of vaccination if you have no significant symptoms. However if you are particularly anxious / stressed before your vaccine, this could "use up" your cortisol so you should up-dose in response to how you feel. It's different for everyone, as everybody is different - so please listen to your body and do what is right for you.

More Information 

Personal Stories

Thank you to our members who have got in touch to share their experiences of receiving the COVID-19 vaccine. Please scroll down to read different peoples experiences, with all three vaccines currently available.

Andrew's Experience

1st dose Oxford-AstraZeneca vaccine in Thailand. Chair of ADSHG Board of Trustees.

"I had my first AstraZeneca vaccine on Thursday morning in Bangkok. It was excellently organised as a group of about 300 for the morning session was whisked off into groups for registration, taking blood pressure, signing consent forms, getting the jab, sitting for half an hour to get our blood pressure checked afterwards and, of course, this being Thailand, getting a little lunch box to help recuperation.

I felt no pain with the jab but, let's face it, if we aren't used to needles, who is?

I had two side effects:

  1. Extreme fatigue the rest of Thursday and all Friday. I had a nap Thursday afternoon (the beauty of working from home) but didn't on Friday, though I was in bed 2 hours earlier than usual that night. Friday afternoon back-to-back 'Teams' calls were really tough. I took a couple of extra 'quarters' each day just in case.
  2. An incredible craving on Thursday afternoon for Indian food. I don't have Indian food very often so it was a bit odd for me. Maybe because Indian food tends to be quite salty. Anyway, it was easily solved here!

I'm delighted to have had it as Thailand now has its worst Covid-19 outbreak so far. A random sample of younger, healthier colleagues suggests I got off quite lightly.  A few of them felt arm pain, sickness and dizziness as well as the fatigue. All are well now, though."

Deana's Experience

2nd dose Pfizer/BioNTech vaccine. Founder & Patron of the Addison's Disease Self-Help Group.

“I had my 2nd dose of the vaccine on Thursday 8th of April, it is really no different than having the flu jab apart from social distancing and sanitizers everywhere.

My arm was very sore the same as the first one, the best bit was that I slept for 10 hours that night in comparison to my normal four or five.

I felt washed out on the next day but not ill so I had a very lazy day.

I would definitely recommend that everyone have both injections, they do not hurt and may save your life.”

Steve's Experience

2nd dose Pfizer/BioNTech vaccine. GP & ADSHG Trustee

"Had my second Pfizer vaccine on Friday. Mildly sore arm, now normal.

No other side effects, no need for extra hydrocortisone."

 

Laura's Experience

1st dose Moderna COVID-19 vaccine in Canada.

"I was diagnosed with primary Adrenal Insufficiency in November of 2020, and Covid-19 cases were on the rise. I was terrified and overwhelmed to try to manage a new autoimmune disease during a pandemic.

Once the vaccines were announced, I hoped that I’d get one as soon as possible. I was able to get my first dose of Moderna on Feb 12th through the Federal Retail Pharmacy Program. It was more comfortable than a flu shot; I felt nothing! For a few days afterward, I had very mild sweating, fatigue, and had a sore arm. I didn’t need to updose at all. But that just means my immune system was working hard to defend me from those Covid virus spikes! I’m excited to get my second dose and any boosters they offer in the future.

I feel super grateful to have been vaccinated. It has been a tremendous benefit to my mental health to know I likely won’t experience any severe long-term effects from the Covid-19 virus! I would encourage anyone with the opportunity to get vaccinated ASAP."

Betty's Experience

Newly diagnosed with Addison’s & an Emergency Nurse

"After years living with an auto immune thyroid condition, unexplainable fatigue and unexpected blood pressure and blood sugar drops I was finally diagnosed Addison's disease last year.

This itself was an unusual experience with a certain pandemic impacting my hospital admissions and out patient appointments. Truly grateful to my GP and endocrinology team.

As a Front line Emergency Nurse, we were in the initial wave for vaccination. Sadly as with many of us with rare disease my associated allergies proved to be a concern... I am pleased to say that with time and sensible conversation with my GP I received my vaccination. I was advised to double up my steroids before I went and for 24 hours after my jab! I followed those instructions and a mildly sore arm was my only side effect.

Second jab is booked and I would advise everyone to  get vaccinated."

Karen's Experience

Oxford-AstraZeneca vaccine

"Hello, I’m 53 years old and have had Addison’s for 11 years, type 1 diabetes for 22 years and thyroid disease for 24 years.

Though I generally feel fit and active, I believe that it was the triad of these conditions that put me on the shielding list, consequently I was in the Group 4 vaccine priority group.

I received my first vaccine on 23 January 2021, it was the Oxford Astra Zenica one. I was fine until eight hours later, when flu like symptoms came on quickly; headache, aching muscles and joints, fatigue and nausea, I did up dose my steroids to manage the symptoms.

It lasted 48hrs and then I was ok, a sore painful arm lasted for five days.

All in all, much better than the potential harm Covid-19 could cause and I’m very thankful to the NHS for it."

Kimberley's Experience

Pfizer/BioNTech vaccine

"I had my COVID-19 vaccine 2 weeks ago and had no issues. I have primary Addison’s and also have underactive thyroid. I was only diagnosed 6 months ago.

I was given the Pfizer vaccine. They nurses were a little cautious initially and I stayed a little longer after to make sure there were no side affects. The nurses checked on me several times.

The only side effect I had was an achy arm for 24 hours. No need to updose."

Dan's Experience

"Due to Addison’s being only one part of my Autoimmune Polyendocrine Syndrome Type II, I am in group 4 for vaccinations.

I got my first dose in the early morning last Friday. By lunchtime I was feeling so rotten I actually took a stress dose and spent the day laying on the sofa! It felt like really bad flu. Body aches, feverish and chills. By bedtime I was fine, but beware!

Have your steroid on standby or better yet perhaps take a stress dose right before the vaccination. Just in case."

 

Ingrid’s Experience

“I am 76 years old and have had Addison’s for 7 years. Still active - looking after my horse (mucking out is good exercise) and am a fair-weather golfer. Enjoy walking and spending time with my grandchildren.

I had the vaccine on Saturday 30th January 2021. I was fine on Saturday, slight ache in arm from the injection on Sunday. I did not feel great on the Mon following the jab. Nothing alarming just very lethargic and a bit ‘off’!  Bit like a lousy Addison’s day. Good nights sleep and fine next day. 

Certainly no reason to not have the vaccine. I hope this is reassuring for others.”

Chris’s Experience

Oxford-AstraZeneca vaccine

“My GP practice had decided I was "extremely clinically vulnerable" so I ended up in group 4 on the COVID-19 vaccine jab priority list.

My vaccine letter arrived on 3rd February 2021 and within 24 hours I had received the Oxford AstraZeneca jab via a booking process on a website.

No problems that evening but sore arm and a touch of flu-like symptoms the next day. All gone by the day after and only felt the need to take an extra 5mg of hydrocortisone before the late pm jab - more a precaution than anything else.

Would definitely recommend the jab to everyone and just remember to mask up and sanitise hands often during the process (more people than I'd seen for 10 months!)

Keep safe and well everyone :-) ”

Pippa's Experience

Pfizer/BioNTech vaccine. ADSHG Digital Communications & Engagement Officer 

"As soon as the pandemic began my Nurse rang me to say I would be on the shielding list due to my health conditions, which includes Primary Addison's disease.

I live alone so have been able to work from home and shield ever since. When my Nurse rang me to book me in for my vaccination I was really emotional. I was given an appointment for Saturday evening and was very nervous. I took all the government letters I'd received since the pandemic to the vaccination centre but these weren't necessary. I gave my name and NHS number and was taken to the nurse. It was very strange to be in a room with so many other people!

The actual Pfizer vaccine didn't sting at all. It was better than the flu vaccine and nothing on a B12 injection which I find really stings! I took paracetamol and set alarms on my iPhone to remind me to take more for the next couple of days, as I'd read that a fever is a very common side effect and I wanted to try and keep this under control.

I'm really glad I did as the next day I definitely felt like I had flu! My arm did now hurt, but the biggest symptom was that crushing "Addison's" fatigue (which if you know the condition you know how that is not normal tired!) I increased my steroid dose by half for the rest of the week and rested at home. This whole time I kept up the paracetamol and this helped slightly with the headaches.

I always react like this to "bugs" and general illness. I felt really grotty but the whole time I was thinking "Wow if this is how my body reacts to the vaccine, I dread to think how my body would react to COVID-19!"

I'm still quite tired and generally headachy so I'm spending more time resting and pacing myself than usual. I will go back to my normal steroid dose when these symptoms pass.

I'm so grateful to the NHS staff working so hard. Thank you everybody!"

Noel's Experience

Oxford-AstraZeneca vaccine

"Hello, just to let everyone know that I had my first vaccination on Monday. The lovely nurse asked us to let people know there was nothing to worry about and there certainly isn’t.

My wife Anna and I received a text asking us to register on Sunday afternoon which surprised us because, despite being OAPs, we didn’t think we were due until the end of February. They offered both of us appointments at our local Health Centre for the following afternoon which we immediately accepted.

I have to admit to feeling a little nervous (and excited) and doubled my midday and afternoon dose of hydrocortisone but, in retrospect, I probably didn’t need any extra. It was all incredibly well organised. There was a steward at the entrance to the car park who showed us where to line up: there were only three people ahead of us in the queue, all socially distanced, and we were registered outside by another steward. When it was our turn we were directed inside, inoculated with the Astra Zeneca vaccine and directed to the way out. Everyone was very helpful and the whole process took less than ten minutes.

The next morning the top of my arm felt a little numb, I felt a bit tired and had a slight headache… all of which were indicated as possible side effects in the leaflet we were given. A long walk in the rain sorted everything out. Anna had similar side effects but, being younger and fitter than me, her arm ached a lot more and we were both back to normal (whatever that is) the following morning. It’s a huge relief so please don’t be put off and I sincerely hope that, when it’s your turn, your experience will be every bit as assuring as ours.

A huge THANK YOU to all the NHS staff and the volunteers too for their selfless work…

Stay safe, keep well and, in the words of the wonderful Deana, keep taking the tablets."

Naminder's Experience

Pfizer/BioNTech vaccine

"I had my first dose of the Pfizer covid vaccine recently. The hospital staff were outstanding in their care, allowing me to stay until I felt well enough to leave. I took 10mg of hydrocortisone and felt better shortly afterwards.

Working in frontline healthcare, the worry of contracting covid is a constant concern. So I'm truly grateful and privileged to have received the vaccine."

Deana's Experience

Pfizer/BioNTech vaccine. Founder & Patron of the Addison's Disease Self-Help Group.

"I had the Pfizer vaccine on January 28th. It was only an injection so did not see any reason to take extra steroids.

It was really just like having the flu jab, with organised social distancing and sanitising = no problem".

Steve's Experience

Pfizer/BioNTech vaccine. GP & ADSHG Trustee

"Yesterday I had the Pfizer vaccine. Very grateful. I have Addison's and a history of anaphylaxis as a child. 

Mild headache only, settled with paracetamol. Did take 5mg extra beforehand just in case.

Have your vaccination when offered. Never been more important."

Now our amazing NHS continues to work to deliver the mammoth task ahead of vaccinating the nation, using hospital hubs, vaccination centres and other community locations as well as GP practices and pharmacies.

Please visit our Vaccine page where we answer your questions such as:

  • Which priority group are people with Addison’s or adrenal insufficiency in?
  • Should I increase my glucocorticoid dose before having the COVID-19 vaccine?

To join the conversation and hear more from the Addison's community and their experiences of received the vaccine, you can also visit the Coronavirus section of our online forum.

Have you received the vaccine? Sharing your experience can help others with Addison's and adrenal insufficiency. Please get in touch and tell us your story.