PART 1 – Rachel Horne tells her story
It started in mid-November with a headache – a continual pain clamping down on my skull. Then came the tiredness. Reluctantly, I opened a lateral flow test – swabbed, squeezed and watched as two red lines quickly appeared on the test pad.
I had COVID: the virus which for the past twenty months I’d done everything to dodge. I’d followed all the safety precautions – masking up, avoiding indoor gatherings, shielding when advised – and been triple vaccinated. I’d lost track of all the plans I’d had to cancel/delay: cinemas, theatres, going on a plane, eating inside restaurants…
So finding out I had the Delta virus was a shock. But it also filled me with dread.
That’s because I am one of the 200,000 plus people in the world with MS who is on Ocrevus (ocrelizumab) – a drug which works by suppressing the immune system.
Research has shown those taking Ocrevus and fingolimod (Gilenya) who get Covid tend to have particularly severe and long-lasting infections. Or, more bluntly, are more likely to get hospitalised and even die – despite being vaccinated. That’s because our bodies struggle to develop antibodies after the shots.
That was certainly my case. A recent blood test showed I’d failed to seroconvert after three jabs.
On the plus side, I was pretty fit with no pre-existing medical conditions and my MS was not advanced. I was also in my mid-50’s – not young, but not medically elderly.
I also knew the UK medical regulator had recently approved the Ronapreve – a highly-effective monoclonal antibody which works by mounting an immune response against the virus in vulnerable people if taken within days of symptoms appearing.
The next morning – after getting a PCR test – I showed up at the busy A&E at the Chelsea and Westminster Hospital in London and told them I was immunocompromised and was Covid positive. By now I was feeling wretched and my MS symptoms had flared up. My balance was off, my left leg was dragging and my vision had narrowed.
Bloods were taken, ECG (electrocardiogram) electrodes were placed across my chest to measure my heart rate/rhythm and a pulse oximeter was clipped to my finger.
A doctor came into the room. I explained my situation and asked if I could be treated with Ronapreve. I gave him a copy of my antibody test. I also said whenever I got ill, it took me ages to recover because of my MS. He said he would get back to me.
I spent the rest of the day feeling rotten. As for the doctor, several times he checked on me and each time I asked if I could start on Ronapreve. It’s not easy to be advocate for your own health when you are lying [KS1] [rh2] in a hospital bed, a bit disoriented, but I tried.
It was no use. By late afternoon, the doctor reappeared. He had checked with the neurology department. “We’ve never had anyone who was immunocompromised with Covid in here,” he said.
There’s a long clinical list of Delta Covid symptoms – dry cough, shortness of breath, body aches, nausea, loss of smell and taste and fatigue – that we can all recite by now. Then there is how the virus actually makes you feel. It’s like the worst hang-over ever; a vice squeezing your head, like going a few rounds with world boxing champion Tyson Fury.
The only thing I could do was rest and sleep. Forget reading – too much effort[KS1] [rh2] . I couldn’t even watch much online – looking at baby elephant videos was my limit. As for showers, I didn’t trust myself to stay upright – baths were safer.
Very quickly, I lost my sense of taste and smell. I also had no appetite. I had to force myself to eat. Fortunately, I was not alone. My husband was able to bring me food and keep an eye on me. Thankfully over time, my blood oxygen levels slowly recovered. I started to feel better.
It’s been nearly two months since I first got that headache. I still feel tired and wine and coffee taste pretty awful.
So how did I catch the virus? I suspect I picked it up when I went out to my birthday dinner a week earlier – the first time I had been inside a restaurant in ages. Yes, we were far away from others but…
As for Ronapreve. It’s impossible to know how I would have fared if I had received the drug. On the one hand, I never got seriously ill. But I strongly suspect Ronapreve would have speeded my recovery – and I wouldn’t have gone through those awful days in bed. And for that I would have been grateful.
True twist: Just before Christmas, I was waiting to board a (long-postponed) flight to Florida. Guess who was standing in line behind me? Tyson Fury. I smiled respectfully. I wasn’t up for another round!
Part 2 – Christine’s story: when Omicron sends you to the hospital (coming soon)