Just wondering what your experiences have been regarding taking Paxlovid. I realize you can’t advise but I would love to hear from fellow immune suppressed types like me.
I have taken it before but when I had it last year I felt pretty bad and taking the Paxlovid was a no brainer. This time I am a few days in and just feeling a bit under par: slightly sore throat, slightly achey chest. But the kind of thing that pre Covid wouldn’t have stopped me going to work. And when I balance that up with having to stop my arthritis meds etc it is a more difficult call.
However I jumped onto the trial that some kind person here posted about (to measure Covid antibodies if you are immune suppressed ) and apparently I have “some” but below normal range by quite some distance.
So I suppose ( anxious disposition!) I’m worried that if I don’t take the anti virals I might take a turn for the worse.
Did anyone take a chance and forgo the Paxlovid? Or conversely did anyone with mild symptoms decide that taking it is still the best option?
Very keen to hear both sides. It’s being delivered tomorrow afternoon so I’ve got time to decide!
Thank you all in advance
Bon
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Bon1
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Just wondering if you've contacted the team running the Stravinsky research? Do they have a view on what you do? I think we have to let them know when we ge Covid anyway. I must double-check that, but I do seem to remember Laura telling me to ring her if I went down with it.
Hi there- yes that’s it I forgot it is called the Stravinsky trial! That’s actually a good idea I may email them. Have a good day.
Bon x
I had covid about 15 months ago and I contacted the help line ,as I already had a letter from the NHS telling me to do so. They said I would receive antivirals in 24 hrs. I was then contacted by my health authority, who said no. I was 76 at the time on benepali . They said benepali makes patients susceptible to bacterial infections not viral. It took me about a month to recover from covid. My weakened immune system zapped it in the end.
Thanks for your reply. I think I would have been extremely upset in your position. I don’t take Benepali but a very quick google shows that it suppresses the immune system so I have no idea why they refused you the anti virals. Glad you got there in the end though!
Thank you. I was very upset at the time, because I assumed antivirals were essential , and given to all on biologicals. From what I had read, I thought they were. I have reasonable medical knowledge, as I have a biochemistry degree, but never worked in the medical field. I contacted my GP who said the rules had changed. I have since had an NHS letter, stating each case is assessed by the GP for antivirals. However as rules change all the time, I don't know the current position. Anyway, my immune system kicked in and I am fine now. Wishing you a speedy recovery.
• in reply to
I wish to add ,although I have some scientific knowledge , I do not have the knowledge of a doctor, nurse or anyone working in the medical field. Science and technology changes rapidly . Sometimes a little knowledge is helpful, sometimes it is not. I am always grateful for comments from nurses or doctors on this site.
You will see the reason given Bon 1 was refused anti virals……Benepali makes people susceptible to BACTERIAL infections…so as Covid is Viral it would not offer any protection. ….presumably the clinician at the health authority who advised her knew what he was talking about & indeed a lot of people who did take the antivirals felt very poorly…..so maybe Bon1 had a lucky escape?
Hi Bon1, I went down with a bad throat etc before Christmas was given couple courses different medication which didn’t do anything. Still continued to feel so unwell pains in back aches everywhere just wasn’t feeling better symptoms i have never experienced decided to take a Covid test this was early January (this year) showed positive. Phoned 111 for consultation had to see my gp within two hours of that consultation was put on Paxlovid which got delivered following day. Having RA, Coeliac disease, Kidney problems when i get infections or take anti-inflammatories kidneys tend to decline but do pick up once infection has cleared also not having a Spleen was put on Paxlovid it was the best thing I could had taken. I started feeling better within a few days. Having problems with kidneys I done my own research to make sure medication was suitable.
I stopped my medications for 2-3 weeks after taking Paxlovid needed to make sure medication was out of my system.
You do need to be careful if you have kidney disease as the amount needs to adjusted slightly rather then taking the 3 from the blister pack you only take one of each this i done from the 3rd day. I’m still feeling little fatigue tend to get odd pain in back but nothing compared to how i was.
I’d have no concerns if i ever need to take Paxlovid again.
I’ve had covid twice. First time I felt a bit rough but not too bad but, having reported positive test to NHS didn’t hear anything so contacted GP and was referred to the covid unit and after several phone calls and many questions was prescribed Paxlovid. It might have helped, I’m not sure; I did develop a chest infection a few days after taking it. Second time, reported positive test to NHS, again heard nothing but as symptoms were just those of a mild cold I didn’t bother pursuing antivirals and recovered quickly. I’m on tocilizumab and always have low neutrophils.
I was on Predanisalone and Sulphersalazine with Hydroxychlorquine for a month and stopped the Sulfersalazine as I was going on holiday ( record was 16 times on the loo in a day) and didn’t think I could last standing in the airport queues! At the end of the week I came home with covid ( for the third time) and was knocked sideways, went to bed and didn’t get up for about 5 days. Luckily I had rang the phone number for help and was given the Paxlovid the next day. This drug interferes with other drugs and can heighten their side effects, this went on for weeks, be aware! I had stopped all my drugs before taking the Paxlovid and didn’t restart them for about three weeks but had to stop them again. Recovery from the covid took about six weeks.
Two years ago I was given Paxlovid as soon as I tested positive and felt vile and within four days I hardly knew I had covid and tested negative within seven days. Apart from the metallic taste for the duration of the course I had no side effects and was very glad I’d had the opportunity to take them.
I was on Baricitinib at the time and didn’t think to stop it either - brain fried - but that had no adverse effects. Unfortunately, the Baricitinib stopped working some eight months later but that's probably nothing to do with having anti-virals.
As Kentishman’s doctor has said, there’s always long covid to consider if you don’t take the Paxlovid but of course it’s your choice. All the best and hope you get over it very quickly.
I've had Covid but didn't qualify for anti viral as only on methotrexate and sulfazalazine but I felt worse recently when I got cough and cold than I did with Covid, ( did do a test which are no longer free for us) .
Thanks for your reply. I’m actually surprised that Mtx doesn’t qualify you! That seems unfair somehow given that it is an immune suppressant. Wishing you good health.
Unfortunately it,s not a black& white decision. It doesn’t only rely on what drugs you are taking…..just as important are your general health conditions
Methotrexate only qualifies if you’re taking it for interstitial lung disease. I would still encourage people to contact their gp, as often comorbidities may make them consider antivirals
I took Paxlovid when I caught Covid. I didn't feel really ill before I took it, but I was concerned that I might take a dive if I didn't. I didn't get any worse after taking it. I have had the antibody test and have good antibodies, but if you haven't the Research people may advise taking the antivirals. I'm on methotrexate.
I had covid last April, I'm on mtx and enbrel. I registered online I had covid and was phoned by a doctor. I was asked what drugs I was on, had I had steroids recently and had I got any other illnesses, the the answer to the last two questions was no. Was then told the criteria for getting anti virals had changed and I no longer qualified for them, the data now showed I was at no greater risk than anyone else. I wasn't really ill at all, just cold like symptoms for a few days. Husband on the other hand who tested positive before me was a lot worse.
I took it and was told it stopped it from getting worse. I’m glad I did as being immune suppressed , medications, age ( 65) it helped me a lot in present and long term. I’d take it. That’s what it’s there for 😊
Hi Bon well it's a no-brainer! Before taking it, I genuinely thought I was dying and could not move. Then after taking it, I slowly got better. Basically you have no choice if you want to recover. It took me10 days anyway, and the doctor came to see me at home.
Just a comment for anyone taking Paxlovid. While it doesn't stop the nasty taste in your mouth, Biotene dry mouth gel gives you some relief for a while.
I am in the USA. I have had Covid 4 times. First time I had monoclonal antibodies (before Paxlovid was available) last 3 times Paxlovid. Nasty taste in the mouth was my only side effect. I caught Covid 3rd time October 9, 2023 and 4th time December 28,2023 so 2 months apart. I have had the series of Moderna and a booster so 3 shots. I take Humira Plaquenil (hydroxychloriquine) Naproxen 375 mg as well as zinc and vitamin D 5000 iu and magnesium. I have to stop my Humira for one cycle (2 weeks) after I finish Paxlovid but continue my other medicines. 3 rd Covid time I also had flu type B with Covid and absolutely no symptoms —maybe because of Paxlovid I don’t know. 4th time I had a sore throat and more like sinus but was shocked when I tested positive for Covid since it had only been 2 months. Personally I would not ‘risk’ not taking Paxlovid.
I had covid las June. Was prescribed Molnupiravar, another antiviral. I’m in the U.S., and that med can be used with the heart meds I’m on, paxlovid can’t. Felt pretty good while the antiviral lasted, but had rebound and aphid about 5 additional days of feeling lousy. I’m only on Humira for my RA, I don’t recall stoping it.
I had Covid in December. I spoke with the nurse at covid central over the phone, after a referral from my surgery on the first day of positive test . I felt it was manageable at that point but we spoke 24hrs later to see if things had changed. Fortunately it was rough but manageable still so I decided not to take the anti viral. I would have had to stop all medication for RA, hypertension, and levothyroxine which would have probably made me feel worse than I was feeling at the time . I hope its not too bad for you. Xx
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