My experience of MS and COVID-19 antiviral treatment

I started the disease modifying therapy Tecfidera (dimethyl fumarate) in December 2020 and haven’t had any relapses since! My original relapses were numbness and loss of feeling and I now get sensory symptoms as well as fatigue.

I spent most of 2020 and the start of 2021 in quite a strict lockdown. Although I wasn’t in the 'clinically extremely vulnerable' category, I decided to be extra cautious with going out and seeing people.

This, however, was taking a toll on my mental health. My therapist pointed out the real difference I noticed in myself when I could go out and meet friends. Getting the balance right between going out and staying in was always going to be tricky. And unfortunately on 21 December 2021 I started having COVID-19 symptoms.

Testing positive for COVID-19 and having MS

I’d been negative on a PCR test the day before, but now my lateral flow test was positive. So I had to arrange another PCR. I live on my own with no car and didn’t want to use public transport. So I had to take a 20-minute bike ride first thing the next morning for my PCR test. Not ideal for COVID-19 symptoms!

At this point my symptoms were just like a bad cold, but I could tell I was getting worse, so I called 119 to ask about the new anti-viral treatment. The call handler was lovely but unable to help me and suggested I contact my GP. I also emailed my MS nurse team who again redirected me to my GP but also informed me that I was fine to keep taking my disease modifying therapy, Tecfidera.

Who could help me get COVID-19 treatment?

I was happy to be able to get through to my GP surgery and arrange for a phone consultation with a doctor. But not only had he never heard of the anti-viral treatment, he had no idea who else could help me. I forwarded him the email I’d had from the NHS with the information about the treatments.

For me this was the most frustrating part. I could barely talk because of the COVID-19 symptoms and I felt like I had to argue for treatment over the phone to a doctor who didn’t know the treatment I wanted or how to help me.

Eventually he came back to me saying he couldn’t do anything without a positive result confirmed on a PCR test. I’d also tried to call 111 and got an automated message to call my GP.

I called back on Thursday - now 2 days after my positive lateral flow test - and another GP said the same: never heard of these anti-viral drugs and had I “considered taking Lemsip?”.

Finally a third GP at my surgery came back to me with the promise they’d sent off a referral email – but I should follow up in the morning by calling a number they gave me.

On Friday, Christmas Eve and Day 3, I woke up to the confirmation of my positive PCR from Wednesday. I left a voicemail on the mystery number in the morning and heard back by midday from a member of the reception staff. She was going to look into it for me and couldn’t understand why I hadn’t heard anything yet. At 8pm I got a very apologetic doctor calling me from the treatment team to say he could finally sort out a treatment.

Read about how to get COVID-19 treatments on our information page

A COVID-19 treatment miracle delivered on Christmas day

I was offered two treatments, one is an infusion…but being Christmas Eve I would now have to wait till the ward re-opened on Monday. That would be 7 days since I’d had my positive lateral flow result. The infusion (sotrovimab) was explained as the preferred treatment option, but I was also offered a course of tablets (molnupiravir) I could take at home. I jumped at the chance to take these.

Christmas morning brought a miracle in the form of a courier hand delivering the tablets to me.

I also got a phone call from the distribution centre reminding me to make sure I’m not pregnant before starting the drugs. I wasn’t ever expecting to say I had to do a pregnancy test on Christmas Day!

The tablets arrived in the morning so I could start them straight away – 4 large pills with food, and another 4 in the evening with food, with both doses spaced out as much as possible. Given my COVID-induced nap schedule I was struggling to stay awake for 12 hours but I made it work to take the pills correctly.

How my COVID-19 symptoms developed

I read extensively about the side effects but I was lucky and don’t think I really experienced any. I was busier focussing on the COVID-19 symptoms – which from Christmas Day onwards did start to marginally improve.

I completely lost my appetite and even a Christmas Day Deliveroo didn’t help. But I did keep my sense of taste and smell, just interspersed with a headache, bad cough and an alternating blocked and runny nose. I can’t say if the anti-virals started working immediately, but I think combined with the painkillers and the fact I was already on day 5 of symptoms I was glad to see some change.

The next 5 days of taking the tablets passed quite quickly and 10 days after the first symptoms I was feeling better enough to get up around the flat and thought I could feel the end in sight.

I was super happy to get out of isolation in the New Year and back to work, albeit working from home for a few days. I think I overdid it by thinking I’d recovered so certainly though, as the next few days I caught another infection and needed separate antibiotics to get back on my feet. My fatigue was also really bad at this time.

I’m finally over my COVID-19 symptoms

I took some holiday and time to relax and today on 20 January – a month after first getting symptoms – I think I’m genuinely over it all!

My main advice to anyone with MS who gets COVID-19 would be to get a PCR confirmation as soon as possible and be persistent! Secondly, make sure you give yourself enough time to recover, even once you’re out of isolation.

Feel free to follow my Instagram @RoseannaJeanette for more on my MS diagnosis story.

Read about how to get COVID-19 treatments on our information page