Hi All
Hope you are enjoying a sunny Easter weekend.
I've contracted Covid for the first time, though at this stage my symptoms are mild. I am waiting to be contacted by the antivirals team . I am on Amgevita for my RD. Anything I should do or not do re: the antivirals please? Any of you have any experience of any of the antivirals?
Thank you x
Yes last year I had them in tablet form. They had to be taken within 5 days . They were fine. I was also placed in a virtual covid clinic sending over twice a day my oxygen levels. A year later I don't know the procedure if it's changed or not. Not everyone gets them now even if they did before .
Amgevita doesn’t automatically qualify you for antivirals. It will depend on how bad your symptoms are, other medications, and comorbities.
If they prescribe Paxlovid one of ‘em the side effects is a discussing metallic taste. I found the only thing that masked it was citrus flavours. I sipped a lot of lemon & honey.
About 14 months ago I was given access to paxlovid antiviral when I tested positive which helped speed up my recovery, but it gave me very upset tummy and odd metallic taste in my mouth. Not sure I would bother next time, although obviously would depend how poorly I felt 🤷♀️
Wait & see what the clinician says when they call back…….but do keep well hydrated…..
I’m on Rituximab,& had Covid over Christmas, but everything was closed, so the procedure took forever & by the time they called back…I had passed the time point . I didn’t get the antivirals, but I was fine…..in fact after hearing some of the side effects people were getting…I was quite happy to be monitored at home by the Covid Care team. All fine now.
How long did it take for you to recover from Covid please? I’m day 4 and feel pretty lousy. Thank you
I only felt really bad for about a week or two….….think I tested negative after three weeks.I think it then took about a month with a bit of a cough ,& feeling breathless …but that didn’t last long….maybe another month.
But of course everybody is different.,,,just don’t overdo things & do contact whoever has contacted you if you don’t start to perk up.
Hope you recover quickly too.
oh no, so it’s not just a few days then? Take care
I took the antivirals when I had Covid. I had a metallic taste in my mouth but was relieved to feel protected and wasn't very ill at all.
The rules now say people with RA should have extra vaccinations and so I would presume having extra meds like the antivirals would be the same criteria.
I would ring them up again if you don't hear soon. I just took it easy and eventually tested negative.
How long was the recovery GinnyE?
This was last May. I wasn't really ill at all! Although my husband had cold symptoms for about a week. But I did take 16 days to test negative, which is unusual. I believe you don't have to keep testing anymore however. We were in Greece at the time and they had never heard of antivirals, but you had to isolate for five days. (I was still testing negative, jumped on a plane, double masked, next to a man who was coughing all the way home without a mask, and came home for the antivirals, which they delivered to my door!)
I had antivirals last august when I had covid. I had it as an infusion on a hospital bed and was there for an hour. It was fine. I had to have an infusion as I was unable to take anything orally as I was dependent on a feeding tube after cancer treatment
The guidelines have been updated in March this year. Anti-TNF meds no longer qualify, as they are finding it doesn’t result in serious disease. It is now only B cell depleting meds. I have a friend on Benepali and 25mg MTX as well as potent steroid inhalers who was declined. Here’s a screenshot re tnfs. Also here’s a the link to the newly updated guidance, it’s the section under immune mediated inflammatory disorders that refers to us.
gov.uk/government/publicati...
Physician/consultant discretion is the all important part I think and if you’re taking another RA med as well. Depends on which and your comorbidities too. Also steroids are still a factor I believe. I think if people are feeling awful and have a lot going on as well they should go through the antivirals procedure and get the advice of 119/GP/consultant.
I do feel it will be very much who you speak to on the 119 line.
thank you Neonkittie17. I have spoken with consultant and declined the antivirals for now due to the side effects and them only being tested on those who have not been vaccinated. I’m not suffering from breathlessness so will see if my body can deal with the infection naturally. The consultant will check up on me again tomorrow.
I’m glad it seems to be under control. 🙏🏻💗
Forgot to say, I don’t know what meds you’re on apart from Amgevita which as bleak said direct automatically qualify anyone as it’s an anti TNF, or if any other health issues, but it’s good if you were offered the AV’s but it was your decision to decline the AVs. 💗My concern would always be that someone would under-estimate their risk ... the kind of person who didn’t want any fuss etc., and were reluctant to phone and ask 119 to refer them. x
Thank you! It’s a difficult one, I don’t feel too unwell (in comparison with the pandemic). Will see, if things don’t improve by tomorrow, I may well take the AV’s x
definitely. I agree as the March 2022 version did say discretion to be use when on other immunosuppressants. This time it seems to be giving more leeway. I’m on 5mg prednisolone and 10mg hydrocortisone which is equivalent of 2.5mg pred. I’m also on high dose steroid inhalers, and got a shock to learn recently that my 2mg dose of beclometasone Inhaler is equivalent to 12.5mg of pred. Might explain why I struggle to lose weight 😂. I’m also on the benepali and MTX. Although MTX is only considered when taken for interstitial lung disease. I do have lung issues due to my AS, and it was initially stopped as thought to be the cause, but respiratory specialist insisted I stay on it. Though it’s officially recorded as being taken for my peripheral symptoms related to my AS. I’d definitely encourage anyone to try anyway, as you say it depends who you speak to. I can’t take Pavlovid but apparently the IV one will still be offered via gps, but not sure how that would work.
I’ve a med which Paxlovid isn’t meant to be prescribed with. I think one should not try underplay how one feels and remember to inform them of chronic illnesses and all meds.
definitely. 🤗
i did have antivirals last year , the procedure to get them was very painful 🤷♀️
Eventually got them , awful taste in mouth , felt brilliant but as soon as I stopped them , I had covid rebound and was quite ill 🤒
If I caught Covid again , would think again about taking them but that’s just my opinion, everyone is different
I managed to catch Covid last year. It wasn’t as bad as I thought it was going to be - I fatigue but it wasn’t as bad as the RA fatigue, and a headache, but my breathing. I have severe asthma and bronchiecstasis. When I spoke to a nurse she said I would almost certainly get anti virals because she could hear how laboured my breathing was. The dr who rang agreed with her. This was a Sunday and on Monday I had to go to a hospital in N Birmingham (I live in SW Birmingham) to have an antiviral infusion. It was brilliant. The Covid was stopped in its tracks.
I am on leflunomide and JAKs. Got covid in feb this year. Called 111 and was delivered paxlovid within 24 hrs. I was starting to feel poorly by this time and wish I had called for the antivirals sooner. I was noticeably better within 12 hrs of taking the first tablet. I had no side effects at all (unusual for me) and was very grateful to have had the drugs. I was off my RA drugs for a month, they say not to take the RA drugs for a week after the antivirals to help avoid any kind of bounce back. I was off work for three weeks with terrible fatigue and several weeks trying to get stable with the RA drugs again. I would 100% say take the antivirals as soon as possible.
Hmm, sounds like I am in for the long haul. I thought I would be back to normal within a week
It was a week for me, but it was mild and I'd had 6 covid jabs
I had antivirals on day 3 of getting covid I was lucky that my temperature had almost gone by the time I started taking paxlovid unfortunately for me the side affects were awful and I spent two days on the bathroom floor with awful diarrhoea to the point that I was severely dehydrated and I then sought help from the covid ward and was told to stop them. So paxlovid lasted three days but I was still glad I had them. My hubby had covid at the same time and recovered quicker than I did as five days after testing negative I got a rebound infection which lasted another 3-4 days. All in all my experience of Covid wasn’t as bad as I thought but with the rebound infection I guess it was a month before I was able to take my meds again so had a flare for almost three months after. We are all different but if I get covid again I’m not sure I would have antivirals again.
Hi, hope you are feeling a bit better.
My husband and I also contracted Covid just before Easter, not a good time to be unwell.Being a weekend and bank holiday.
I sent a registered testing kit away and as of yet still had no response.
I did call 119, no response, so called 111.
After 4 GP calls and 2 nurses, who passed me to the triage nurse. (Apparently this is the normal vetting procedure.) All of whom were very nice.
I was put through and eventually advised they were no longer supplying antivirals to those on my meds, but I could contact a new trial who are testing out a new antiviral, but the unit was closed over Easter. They are testing with an actual drug and placebos. I would laugh if I wasn’t feeling so grotty.
But on the positive side, I am not too ill that I can’t cope at home.
The headache is a lot better and I’m not feeling constantly sick.
I have been resting, drinking fluids and opened doors and windows to allow fresh air to circulate through.
I do hope you feel better soon.
Take care, best wishes Sandy x
oh no Sandy. I do hope you and your husband feel better soon too. I spoke with 111 initially with my LFT result. A lovely nurse called me back followed by a member of the antivirals team. This was yesterday. Today a doctor called me back and was happy to staa as et me on antivirals but I declined.
Take care x
If you Google covid gov update there's a new list who qualifies and controlled RA doesn't unless on Rituximab. Uncontrolled on steroids. My partner does as he's got Myasthenia Gravis but I don't now.
111 team told me I wasn't ill enough for them. I think I had just had my Amgevita ,but left off Methotrexate for a week.
hmm, what’s ‘ill enough’? I don’t know if I am ´ill enough’ to take AV’s and don’t want to take them if I can recover without them…
I didnt feel ill enough so didnt really want them. Just 1 day of shivering and 2 days of joint pains. Then felt ok
Hi, I had Covid in March '22. I am on Imraldi, Anti TNF injections and a low, weekly dose of methotrexate (immuno suppressant). I was initially fearful and did enquire about getting Anti virals, although my local Rheumy Dept didn't actually get back to me until 2 weeks later, I was also asking about whether I should skip my next dose of methotrexate and Anti TNF. In the end I decided to go with my instinct and to skip both for just one-2 weeks and didn't end up needing Anti Virals at all. I tested negative again on the 8th and 9th day and only experienced mild cold like symptoms, albeit slightly weird ones! The reset of my family all caught it from me (I am sure I caught it whilst having a check up at the hospital the week before). Strangely, I probably had it the mildest and tested negative again more quickly than the others; from memory the others all took about 10-15 days and that included 2 - 93 year olds! Once I tested negative again, I felt completely back to normal, i.e. in terms of appetite, fatigue etc. Just to note also, that having asked my consultant about Covid and the wisdom of continuing with my meds, whilst having a routine check up tel. consultation during Lockdown one, he did point out that Anti TNF had actually been used to treat some Covid patients in hospital and there was some evidence to suggest it can target the Covid virus, just as it apparently targets the TNF molecule, responsible for inflammation. I don't know about your individual medication though and it might well be that it makes you more vulnerable? I would keep trying to contact your Rheumy Dept and/or GP got get some clear advice on this. I hope by now you are feeling rather better. Drink lots of water and try and get some fresh air, if you feel up to going for a short walk. I also think maybe taking a basic level Vitamin D supplement helps too. I found I craved really strong tasting foods, i.e. citrus, chilli, yeast extract, coffee etc; the latter was a bit odd as I usually go off coffee if I have a cold but again, that only lasted for about a week and I didnt really lose my sense of smell or taste, although clearly they must have been affected to some extent for me to have had those particular cravings.
thank you Cutes for your advice x
sorry you have got the dreaded covid, wishing you a speedy recovery x
thanks Mistydawn and everyone for your input on this thread. I am 80+ like aged crone and after avoiding Covid since it began i tested positive yesterday. RA is well controlled on MTX 7.5 mg, but I have some liver damage and CKD stage 3. I reported test result and waiting for a call back from NHS. I am not keen to start antivirals if I can get better without them though the side effects don’t seem too dire in most cases. I’ll wait and see what the NHS responder says. I shall probably stop MTX for 1-2 weeks anyway.
Antivirals. 
Covid antiviral drug study called PANORAMIC.
Antivirals
Antivirals
Access to antiviral infusion
