A Tale of Two COVIDs – Delta and Omicron: What happens when you’re vulnerable & vaccinated – but still get the virus?

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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.

Positive.

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.

I was whisked in to see a triage nurse who measured my vital signs including my oxygen levels. He was slightly concerned as my blood oxygen level was 92 so I was admitted to an observation room.

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.

So I went home, got into bed and essentially [KS3] stayed there for more than two weeks.

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)

Rachel Horne is a journalist who was diagnosed with MS in 2009. She regularly writes about MS and is on Twitter: @RachelHorne19

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Rachel Horne

20 comments

Leave a Reply to Barbara van Amerongen Cancel reply

  • Rachel, thanks for sharing. Have you fully recovered without long covid? How much vitamin D3, omega 3, magnesium, zink, or selenium etc do you take?

    • Thx for asking. I am not fully recovered – (nearly two months on), but I suspect I will soon be there. I take 5,000 IU D3, Omega 3, and zinc – always.

  • Sorry to hear of your dreadful experience, both with having Covid but also that the hospital didnot prescribe Ronapreve despite you explaining your condition and having proof of non sero conversion. It’s a very sorry state of affairs. I am on Fingolimod and fully empathise, it must have been a very scary time for you. I have a ‘hospital bag’ at the ready including copious printouts of what should be done if I catch Covid and links to the relevant info on the MS Society website. I hope of course it will not be needed but also hope that someone will take note! You should never have had to be at home fighting Covid, Take good care, slow and steady and I hope you never have to go through that again because ‘we haven’t had anyone immuno compromised before’.

    • Thank you for your concern. Heartened to hear there are now more options for immunocompromised people who get Covid – beyond Ronapreve. Think you are v wise re hospital bag – and print-outs at the ready… though obviously I wish you didn’t have to do that in the first place! Take care.

  • Sorry but I can’t find any reference to fingolimod or Gilenya in the referenced paper (https://academic.oup.com/cid/article/72/2/340/5864040). Moreover, as I understand, from 84 cases on anti-CD20, only 1 death occurrs (while having 35 cases with unknown outcome).

    So how the statement that “Research has shown those taking Ocrevus and fingolimod (Gilenya) who get Covid tend to have particularly severe and long-lasting infections […] and even die – despite being vaccinated”. occurrs?

    I am asking this, because for us, pwMS on anti-20 and fingolimod, it’s very frustrating to struggle everyday between social (long) distancing, preclusions, non-existing seroconversion, negative antibody tests, medical articles and papers that show how vulnurable we are. I thinkg our primary consern is: are we likely to die if we catch covid? If yes, is this a hypothetical guesstimate or it’s an official fact based on research?

    Thank you!

  • Thanks for writing Rachel, knew you’d do it brilliantly 🙂

    You were a few weeks too early, if it happened today you’d have your personal QR coded PCR test to hand, followed up swiftly with a course of molnupiravir to take at home. Might have nipped it in the bud and saved you a tough fortnight…

    That said, sounds like you’ve done a great job in bouncing back and even squeezed in a holiday to Florida! Thanks again for writing, look forward to hearing part 2.

    • Thank you for your concern. Heartened to hear there are now more options for immunocompromised people who get Covid – beyond Ronapreve. Think you are v wise re hospital bag – and print-outs at the ready… though obviously I wish you didn’t have to do that in the first place! Take care.

    • You are very kind!
      I know – too early! Through social media, I have heard of people with MS who have had good experiences of getting molnupiravir and sotrovimab – so thanks for highlighting this.

  • Thank you very much for sharing your story, Rachel. It’s really hard for us anti cd20 treated patients to make decisions on how to live at the moment. I’m on rituximab and even quit my job (teacher) to avoid getting infected, even though I’m young (in my late twenties). Reason being I haven’t done very well with other infections.
    I’m hopeful the up-and-coming T cell focused vaccines will do the trick. Or maybe that – in time – antiviral therapies and monoclonal antibodies turn readily available for most at risk groups.
    I wish you a speedy recovery. And fingers crossed you’ll be able to enjoy wine and coffee again soon.

    • Markus – I am sorry to hear this. I also find the anxiety and uncertainty mentally draining… also find it exhausting to constantly explain to well-meaning ppl why I can’t do things – despite being vaccinated.
      I am sure things will get better as you say…
      Take care.

  • Your story is shocking and disappointing. It is scary that neurology seemed ill prepared for your circumstances. I hope you manage to shake it off soon.

  • I am on fingolimod, double-vaccinated, in my early 30’s, mounted immune response (albeit with low antibody levels) and got COVID (most likely the Delta variant) in early December. My oxygen levels were always above 95 and my main symptom was fever. All in all, thankfully, it was quite mild for me. However, I was given Ronapreve as a precaution a few days after my symptoms onset. A few hours later, I started feeling very poorly (it could be because of COVID, it could also be a side effect of the monoclonal antibodies). Yet, the next days all my symptoms were gone and I made a full recovery.

    The odd thing is that after having no symptoms at all for 3 weeks, I suddenly got the Omicron symproms (itchy throat, sneezing, fatigue, runny nose). I did a lateralal flow test and the result was positive again… I have no clue if it was a reinfection or if I was positive against COVID for a whole month.

    • So pleased you wrote this – and so pleased your Covid experience was relatively mild (I know it is no picnic regardless). Re – possible Omicron. I do know last week I got all the same symptoms as you. Like you, I was wondering if I should take a lateral flow… as was not sure if the result would be accurate. Husband same symptoms.He took a lateral flow – and negative. Was it just a cold? Was it Omicron? Stay well – and fingers crossed!

  • Hi Rachel, thank you so much for sharing this with us all. If it is any conciliation, you’re helping us immune suppressed folk with what to look out for. The medication should have be available to you and I question the reasons why it wasn’t forthcoming! The availability of the drug I assume was available & if little known about a pwMS/immune suppressed, that they could have spoken to a Neurologist who was aware. In fact, having had to jump quite literally, on a Dr when my late Mum’s infection (pneumonia) wasn’t responding to the level of drug given – I know the frustrations & if I wasn’t present my Mother would not have survived that part of her life!

    Anyhow, without making you feel any more depressed or anxious about their lack of knowledge or understanding – I am relieved to know that you’re through the other side but concerned that you are left with the after effects. A lot of symptoms seems to be very much mirrored to that of MS – Me being asthmatic and having a heart condition my immune suppressed state is pretty rubbish, so I’m on constant alert as soon a I start to cough or get even more breathless!

    I hope that you’re struggle with the after shocks of the virus that you do start to feel better and can manage your MS – as before. Good luck with everything and once again, thank you for sharing – we can beat this blinking virus guys and if we all stick together, HCPs too, to keep fighting and trying all sorts of possibilities to help if you become sick with the virus. Please, please ask all your healthcare professionals to at least share information and put something in writing (we are not going to sue you – if it is an attempt to save your life). Their are various routes given to us already, but please ensure that someone can fight your corner and is aware of them. You are not always up to it (Tyson Fury fight Rachel!). God bless xxx

    • Jane… I am sorry to hear what you went through with your mother. Can I have you on speed-dial next time things get dicey… you obviously have the Tyson Fury touch!
      Please stay well and I so hope you avoid Covid – and any other viruses/infections lurking. We will get through this. So pleased there is a strong MS community!

  • Interesting read having just returned from the priority post box. I’ve been on ocrevus for 18 months. Started 4 months before the first vaccines. Since then I have had 2 jabs, delta, a third primary dose and now I’ve just tested positive again. Cursing my luck / timing. Oh….and it’s my wife’s 40th today 🤦

    • Oh no! You couldn’t make it up! I truly hope this next bout is relatively harmless and you start to feel better soon. Take care.

  • Rachel – as someone who contributes such valuable posts to the Blog, on top of living with MS and of course just simply being a person struck down by a new virus to human beings – I’m so sorry this has happened to you! And shocked and annoyed at the inadequate response you received when in hospital!

    It would have benefited lots of PwMS who contracted Covid in 2020 if we’d all been on the extremely vulnerable list then. With Omicron being so prevalent and therefore likely to get each and every one of us the steps we can take – as you have described you followed – seem almost futile. At least we are now on the list and have the reassurance of PCR test through the post, NHS number to call and the likelihood of being provided with antivirals.

    Having read about the capacity Covid to impact the CNS and for even mild Covid to damage the brains grey matter I sincerely hope that you make a full recovery and that your evident intelligence and insightfulness continues to be applied to future posts.

    All the very best!

    • Thanks for your kind words. I do think more could have done in the early stages of this pandemic to alert people with chronic illness about Covid risks etc.
      Take care and all the best!

By Rachel Horne

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