covid ~ anti virals

[RachelD1972]

Hi all, I’ve tested positive for the first time this week. Waiting for anti virals to be delivered. I was advised to contact rheumy re stopping or carrying on with meds. No one is answering and no answerphone on. On Abatacept and Mycophenolate. Can I ask what you have all been doing? Know we are all different but may have to make a judgement call myself. There’s no drug interaction between the meds and anti viral..Thank you x

[Madmusiclover]

I was told to stop rheumy drugs until I felt better. I found I had a couple of false starts before eventually getting back on rheumy drugs.

[RachelD1972 in reply to Madmusiclover]

Thanks, I’ll try calling them again tomorrow as Biologic is due Saturday.

[Madmusiclover in reply to RachelD1972]

Is there advice on info they gave you or on any patient leaflet about what to do when you have an infection? I think the antivirals aren’t the issue; it’s the infection. I didn’t actually take antivirals when I got Covid

[girli1111]

I’m on different meds, but my rheumatoid team in Berkshire advise stopping meds

[Mall]

I have recently recovered from covid. It was my second bout, the first one about a year ago. I take methotrexate and Benepali. I tried to get anti virals for my first bout but due to administrative cock ups i wasn’t put through to the right team until it was too late to be prescribed the tablets. I recovered ok without them but was ill for about 2 weeks and felt fatigued for a while afterwards.

This bout I didn’t ask for antivirals as the symptoms were like a heavy cold and I recovered quickly as with a head cold. On both occasions I stopped taking the immunosuppressants as soon as I became aware of having covid and only resumed once I felt well. This is the advice of my rheumatologist who knows how stopping will affect my RA. We are on differed drugs and will react differently to stopping , please keep trying to speak to your medics for advice. Only they and you if you have been on the drugs a while know how stopping them will affect you and whether you need to stop to fight of this infection and stop it progressing to something more serious.

[RachelD1972 in reply to Mall]

Thanks, they’re not picking up and no voicemail to leave a message beyond peed off! It’s taken me 30+ hours of calls/waiting for call backs and deliveries to sort anti virals for me and my dad who has blood cancer. For me it’s like like a cold bug but my joints have gone crazy. Dad is worse. I’ll keep trying. Fed up with jumping through hoops for everything x

[Mall in reply to RachelD1972]

It’s good to hear you are not to poorly. Try you GP, especially if GPknows you and your Dad. Have you past experience of stopping your drugs for infections or surgery? Usually they provide information when you start taking immunosuppressants about what to do in the event of picking up an infection.? It’s frustrating but keep trying .

[Hidden in reply to RachelD1972]

Hi Rachel What hospital are you under? We may be able to get a message through for you to the team (can't promise but willing to try) Send me an email [e-mail] and I'll see what email contacts we have for the team you're under.

[RachelD1972 in reply to Hidden]

Thanks Clare. Just updated, have to stop both x

[RachelD1972]

Update; They have just called. I have to stop both meds until 7 days after I’ve tested negative. Oh the joys 😬. Meant to be going to Tenerife end of next week. Could make for an interesting holiday by then! Thanks everyone! Xx

[Barbs52]

hi Rachel I was told by my rheumatologist to stop Mycophenolate if I got an infection of any type and while on antibiotics and when I got Covid I was told to stop taking it until I was ok again. Hope this helps and that you feel well soon 🌺

[Blodynhaul]

HI Rachel,

Just thought I'd say my own experience - though everyone is different!

I got Covid last year & while on the JAK-inhibitor Filgotinib. I had an antiviral infusion the day after I tested positive (had stopped the drug when tested +). I'm not sure how many others have had it, but I had an awful reaction to the antivirals - sudden extremely high BP, red patches & swellings, terrible thunder headache, like a stroke was coming. Also - weirdly - like a switch going on - had a sudden bad joint pain inflammation localised in a finger on the opposite hand to the infusion! the nurse stopped the infusion & after a couple of hours things returned to normal.

No intention to be alarmist or suggest it will happen to you, it's just something that makes one realise how weird our immune systems are and how they can be affected - both to our advantage (as the JAK-inhibitor is doing for my RA) - and adversely eg. my particular reaction to the infusion!

I was also told to stop the drug if I had any infection etc - I stayed off it for 8 or 9 days, until I felt better. GOOD LUCK! hope you feel better soon.

[Bessieboo1]

I’m not on the same drugs as I take Rinvoq but I was advised to stop taking them for the 5 days I was on the antiviral meds for plus a further 3 days so 8 days in total.

Hope you feel better soon xx

[Ruth12345]

I was told to stop all my meds when I was given iv anti virals by the nurse and to contact my rheumy. They said stay off meds for a week/10days??? Sorry was 18 months ago. Hope that helps🌻