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Taking part in a coronavirus vaccine trial when you have diabetes: Brenda’s story


Brenda Riley

Diagnosed with diabetes at the age of 58 in 2005.

It’s important for some people with diabetes to take part in research trials. I’ve benefited from lots of different diabetes treatments and I’m grateful to people who took part.

Brenda has type 1 diabetes. She joined a trial of the Janssen coronavirus vaccine last year, before the two main vaccines were launched in the UK. She talks about what it’s like to be part of a research trial and looking after her diabetes during the pandemic.


Well prepared

I was at the GP surgery and the nurse asked if I’d like a thorough check-up. When she tested my blood sugar, she said it was four or five times higher than it should be: “You’re definitely diabetic – although I’ll have to send off another blood test to confirm it.” 

I was diagnosed with type 2 diabetes – and 10 months later, the diabetes healthcare nurse put me on insulin.

My father had diabetes and as child I remember he used to inject twice a day. And I knew there was a risk I might develop it myself. So the diagnosis wasn’t an absolute shock.

I know that if I’m having hypo symptoms, I need something sugary. But if my dad was having a hypo, he’d say: “I can’t have a sweet”. In those days, patients were given a diet sheet and told not to eat sweet things. 

Six years after my diagnosis, my consultant said: “I’ve got some news for you. You’re definitely type 1.”  The only thing that changed for me was that I came off metformin which I’d never got on with.


Vaccine trial

I’m on the Janssen vaccine trial (Johnson  & Johnson) where you have two jabs. I’m in ENSEMBLE2, a phase 3 trial, which involves thousands of people and starts when the vaccine has already been tested on hundreds of people.   

I wanted to join a vaccine trial because it is important for people with diabetes to take part so the results can be shown to be relevant to us. And I wanted to give myself the benefits of a vaccine before I was likely to get any NHS-issued vaccine. 

I had registered for vaccine trials on the NHS website. I’ve been involved in other research trials, so I know how high the standards of care and research methods are. 

I think some people are frightened of research. They don’t realise clinical trials are carried out by hospitals. Some of the money they get will go into improving patient care. They’re known as research hospitals. They attract up and coming medics and research adds to the hospital’s prestige.

A lot of research trials are nothing to do with medicines or injections. For some trials, you might just give blood samples, or have things measured, such as the sensitivity in your feet. 

Getting the vaccine

On trials, half of you are given the real treatment and the other half are given a ‘fake’ treatment. (placebo). When I was called up for my actual NHS vaccine, I rang the hospital and found out I’d had the real Janssen vaccine. As I’d had a vaccine, I was told I couldn’t have the NHS one. It was a bit of a worry as I couldn’t be sure that the Janssen vaccine had worked but it looks now as if the vaccine will be approved which is reassuring.

When I went for the first jab on the trial (December 2020). I was so busy talking to the research nurse, whom I knew from my previous diabetes research trial, that the injection had already been done without me realising it.

I was interested in the 15 minutes afterwards to see if it affects my blood glucose, but it didn’t. About 10 days later, my arm was sore - but apparently your body’s reaction can be anytime up to the first three weeks. When I had the second vaccination in January, I just felt a bit achy for a day.


What's helped in lockdown

Just before lockdown I had an appointment with my diabetes consultant who asked me if I’d like to be put onto Dapagliflozin. I had actually been on the trial that led to it being prescribed for people with type 1 as well as people with type 2 diabetes.

Since taking Dapagliflozin over the last few months, my HbA1c has come down from 75 to 61mmol/mol, I’ve lost some weight and my blood pressure has improved. 

To help me reduce my HbA1c and my risk of getting Covid I’ve been paying for myself to use the Freestyle Libre full time. This means it’s easier to keep a closer eye on my blood sugar. It means I don’t have to keep washing my hands to do finger prick tests when I’m out shopping or at the hospital.

My hypo awareness is quite good. But when you’re living alone, using the Freestyle Libre is very reassuring. It makes it so easy to see what my blood glucose levels are doing – and to take any relevant action. 


Looking after myself

I find that my blood sugar goes lower when I’ve been gardening. I don’t know if it’s the fresh air or the exercise. When my husband Pete was alive he’d say when I’m in the garden I forget what time of day it was because I get carried away. 

I try and make myself do half an hour exercise every morning – a mix of aerobics and stretches and exercise bike. 

Blood sugar control

One thing I’ve found helpful for my blood sugar control is to take my insulin 20 minutes or more before I eat. That gives the insulin time to start working. I got that tip from a talk by diabetes researcher Professor Simon Heller, at our Diabetes UK local group here in Sheffield. 

One of my biggest challenges is trying to get my weight and blood sugar down. If I lose weight I tend to find my HbA1c goes up and vice versa. But the Dapagliflozin is helping with that.

My diabetes philosophy

But it’s important to be kind to yourself. If you’re newly diagnosed, for example, you learn to get better at looking after your diabetes like everything else. If someone gave you a book on nuclear physics, next day you wouldn’t know everything about nuclear physics would you?

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