Covid positive - anyone with antiviral experience

[ruablue]

hello lovely people of this wonderful forum - seeking any insight or guidance

I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment.

Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it for last 4 years).

I wonder if anyone could share their Covid experiences and the antiviral process and if they found antivirals impactful, which ones were they?

Thanks as always

yours ruablue (who may be slightly anxious, given the circumstances - eek)

[CarolMcl]

Hi, sorry to hear you have COVID. I've had it twice.....one hospital admission and 2 courses of antivirals. With regards to getting them I contacted the COVID line (Scotland) and was prescribed them straight away. My son had to collect the second lot as it was Christmas eve 2022, but still no issues. Both times I had Paxlovid and experienced what can be described as having a bad cold and being very lethargic. Hope this helps 🌹

[ruablue in reply to CarolMcl]

This is super helpful (and reassuring) - sorry you had to go through that but I really do appreciate you sharing your experience with me.

Have a lovely evening and a fabulous weekend and take good care of yourself 😊

[CarolMcl in reply to ruablue]

Hope you feel better soon 🌹

[LucyJean]

Hi there, if you live in England you need to call 111 and tell them you qualify for antivirals and need to speak to someone in the Covid team for your area. You should get a call from a Doctor to discuss the situation and prescribe anti-virals, either tablets or infusion. If you have any problems badger your GP surgery for help. You could also talk to your Rheumatology department and they may suggest that if you are on any immunosuppression that you temporarily stop it and they may help you access anti-virals.

You need to have the antivirals pretty much at the start of diagnosis though. Really no later than 5 days after first symptoms.

Any signs of serious complications, difficulty breathing etc do not hesitate to call an ambulance to get actual treatment in hospital. The anti-virals will hopefully help, but they are not a cure for Covid.

Hope that makes sense. And more than anything I hope you have it mildly and recover quickly.

All my best

Lucy xxx

[ruablue in reply to LucyJean]

Hi Lucy

Thank you so much.

I managed to get an appointment with the local Covid medicines delivery unit today so hopefully can start on the antivirals asap.

Really appreciate your kindness- I too am hopeful of a positive outcome.

Have a lovely weekend and thank you again for the guidance.

Rua

[cheeselover342]

Hi there. I caught Covid in Easter last year and was prescribed Lagevrio anti virals. I am on Mycophenolate and was fine, just very tired. The key thing is actlng promptly. The rules have changed now and I agree with LucyJean - calling 111 is the first port of call. I'm glad you have something set up now. Hope you feel better soon.

[ruablue in reply to cheeselover342]

Thanks so much

I was due to have a telephone appointment with the Covid medicine delivery unit at 9am but still no call - have tried to call but no answer- getting a bit more anxious now but hopefully a call will arrive soon 🤞

[Clangerscat]

h

Hi ruablue hope you are sorted out now🤞. My only experience of covid is catching about 2 weeks after I’d been diagnosed and having no idea that I should have antivirals or stop my mycophenolate. Having said that after a few days of feeling a bit yuk I was fine without any intervention. Trouble is we are all different so hope you get your medication and feel well soon.🤗

[ruablue in reply to Clangerscat]

Hi Clangers cat - all sorted now - have antivirals so will see how I get on - so far just sniffles, cough and sore throat with a few aches but happy to take them - rather be safe than sorry.

Really appreciate your taking the time to respond with your story

Have a great evening

[Mylomydog]

Hi. I caught covid last year just before christmas, i was highly anxious about how ill i might get as i have limited systemic sclerosis and was aged 48, seems i was panicking for nothing as it didn't floor me and i recovered fine, i didnt have any antivirals either but i did call the doctor as soon as i tested positive incase i should need them.sorry i can't be of any help about the anti virals but hopefully like myself you won't need them.

[ruablue in reply to Mylomydog]

Hi - thank you so much for sharing your experience with me - it is comforting to know that it can just it us mildly - hoping mild is all I get too - so far, feels like a bad cold so if it stays that way, I will be good 😊 have a lovely Sunday

[LilyInTheSun]

Hi, sorry you've got Covid - I understand how scary that is when you have scleroderma.

I also have scleroderma and mild ILD, and I'm on mycophenolate. I caught Covid just after Easter last year (after managing to avoid it until then), and was able to get antiviral tablets through the NHS within a couple of days. Sorry, I can't remember what brand of antivirals I had. I felt a bit rough the first day (mostly fever, chills, muscle pain), but once I was on the antivirals I felt much better pretty quickly and just had mild symptoms. My husband, who is otherwise healthy and didn't get antivirals, was actually much worse with Covid than me and took longer to recover, so I do think the antivirals made a big difference to me. Neither of us have been left with long-Covid, either.

So I hope the antivirals help you too and that your experience of Covid is much better than you're expecting. I actually felt better having had Covid, as I'd been worrying about catching it until then. So having had it but with only mild symptoms was reassuring. I hope it's the same for you.

Take care, rest up, and don't hesitate to contact your doctor if you have any concerns.

[ruablue]

hi Lily - thanks so much!

Yes, fear was the first thing that popped into my head when I saw that little line pop up on the test - but then into logic and action mode - managed to secure the antiviral meds so hoping my experience is similar to yours and the journey through covid is a mild one - I have to agree, in some ways, I too am also a little relieved to hopefully get it out of the way with no long term impact. I’m so incredibly grateful to you for sharing your story - it has helped me greatly- this forum is a real gem!!!

Have a wonderful evening and take care 😊

[castlewalks]

is there anyone from NI with scloderma who has experience of getting anti viral medication as a result of getting Covid?

I got Covid 2 wks ago & didn’t even try to get anti viral as was feeling ok at the time & didn’t know how to go about getting them, tho I am now v tired but understand it’s too late for medication. Probably the reason for my reluctance was due to when I took Covid 2 yrs ago I had spoken to a GP about antiviral medication & she was very scathing & dismissive about my request. Do I need to be registered somewhere - GP/ rheumatologist to get the medication? Thanks