Has anyone CEV had anti viral meds after testing positive?

[Forevergold2838]

Just wondering what to expect. I'm CEV, DH currently has covid I'm testing negative but started with symptoms this evening. Are the anti virals just oral meds given at home? Any side effects etc?

I don't know anyone personally.
All the CEV people I know who had a letter to say they were eligible, along with a PCR kit in some (but not all) cases, were told when they tested positive that they did not need the drugs.

My daughter had it. When you get the positive PCR you ring a number and they talk to you about whether you need intra venous or oral meds. She had oral meds and someone had to collect them from the pharmacy. She felt better on the meds then not so good when she'd finished. It took a while to recover fully but could have been a lot worse without 4 jabs and the anti virals.

No as it took days for anyone to call me back. It seems to be working in some areas but not in others.

I know someone who has had them. He felt fine as soon as he started taking them, much better than the rest of his family who obviously weren't taking them. He took them orally and had no side effects.

Great, thanks for all the replies. I've had 4 vaccines so I'm hopeful that I'll be ok if I do test positive.

My son is CEV and has 4 vaccines as well. He tested positive 9 days ago and I reported immediately to his specialist. The hospital called me within 2 hours with a plan for antivirals and an infusion of IV antibodies. At the end the infusion was considered not necessary but he was prescribed a course of 5 day Molnupiravir. It's brilliant.

If you test positive make sure you report it as soon as possible to your doctor or hospital in charge of your care.

My DH had the intravenous antivirals (Sotrovimab) at hospital. He was there about 2 hours. He sat having a coffee and biscuits while having the drip. Very straightforward. He was told by the staff that they had calculated that cost to the NHS for intravenous antivirals is around £10,000 per patient. The cost of antivirals in tablet form at home obviously much less but also less effective. He’s been ill. Has not been back to work yet and still has dizziness and other symptoms. But he was not hospitalised. I think he would have been had he not had the antivirals. They are worth it.

I had the NHS letter, the priority PCR and my medication/condition was eligible for antivirals, but when I tested positive last month I was told the eligibility criteria had changed in the past couple of weeks and I was no longer eligible. People I know with my condition who are on even more hardcore immunosuppressant medication have also been refused.

I'm still eligible for LFTs (I need to check I'm negative before I inject my medication) and any boosters that come up (I'm in the three primary doses plus booster group). So I've no idea what's changed, or why.

I was really unwell for three weeks, still have symptoms and have had a permanent flare since I caught Covid over a month ago so I really, really wish I'd been eligible.

The drug price for Molnupiravir Is about £500 for a 5 day course.

Obviously cost of running the service means the total cost will be somewhat higher.

It's not about the cost, it's the treatment that's best for you. An IV infussion in hospital is always going to cost more because there is the bed and staff adding to the cost treatment.

My son's doctors, the ones treating his condition wanted the 5 course antivirals. The Covid specialist in another hospital wanted both - the infussion and the antivirals. At the end it was my son's doctors who made the decision taking into account that his response to the virus had been very mild.

There is no one fit answer for all. You just need to contact your doctor/hospital asap when you are positive.

TypicaIMe if you don't mind me asking, do.you have IBD? What meds are you on? I have crohns, I'm on 6 mercaptopurine and humira injections.

@Forevergold2838

TypicaIMe if you don't mind me asking, do.you have IBD? What meds are you on? I have crohns, I'm on 6 mercaptopurine and humira injections.

I have rheumatoid arthritis, I inject 20mg methotrexate weekly and currently have kenalog injections every three months to try and get my disease under control.

TypicaIMe I see, I associated the flare up with IBD. I hope things settle for you soon.

My Dad has had the 4 vaccines, home PCR and free LFTs, but having tested positive was told he wasn’t eligible for antivirals

@Forevergold2838 DP has just tested positive and also has crohns he is on oral aziathioprine. I've to go and collect his prescription for the antivirals in an hour. He was a bit dubious about accepting them but it's good to hear it's worked well for those that have received them.

People I know who are eligible for antivirals were unable to access them in time. The system doesn't work IMO.

I was CEV due to be asplenic but didn’t have a letter or notification about antivirals. When I tested positive in January I spoke to my GP who felt I should have them and advised me to call 111.

A clinician called me back, asked some questions and said that yes, I was eligible for them and could I get to the nearest hospital administering them intravenously, and that someone would call to set up a time to go.

I had another call the following morning to say that I hadn’t been forgotten about and id get another call within the next 24 hours to set up an appointment.

That call came later in the day, from another clinician who asked me the same questions again and decided that I didn’t actually need them because my symptoms were mild. That was fine but I was only on day two and concerned that I’d get worse, thankfully I didn’t.

I’m CEV, tested positive last Sunday and logged it immediately. Got a text & email same day saying someone would be in touch about anti vitals and another saying I might be eligible to sign up for the Panoramic trial of antivirals as I’m either over 50 or 18-49 with medical conditions (I’m actually both!) Monday I got another test to say they had passed my details to the local NHS team and someone would be in touch to discuss the possibility of antiviral meds. Tuesday I got a phone call from a nurse to take some details about why I might be eligible and she said she was passing my details on to the pharmacy team who would get in touch to discuss in more depth and make the prescribing decision - it’s now Friday and I’ve heard nothing more, and in a few hours it will be outside the 5 day window for medication to be started.

I get the feeling they’ve delayed long enough to stop me from being eligible and I wonder whether I shouldn’t have just signed up for the trial!

I’m CEV (blood cancer) and tested positive 1 week after a chemotherapy treatment.

I was given the IV antibodies. The clinic was already full so they sent someone round to my house to administer.

The drip took about an hour, nurse was here roughly 2 hours in total. I felt very woozy afterwards but started to feel a lot better the following day and picked up much faster than my (otherwise healthy) husband.

Getting them was pretty disjointed- if you test positive and don’t hear within 24 hours then chase where you can.

System worked very well here, DH was contacted the day after he had sent off his home PCR and had a detailed discussion with doc about intravenous anti-virals. In the end he decided against as he wasn't feeling too bad and felt that the risks outweighed the benefits.

In the meantime he was sent another home PCR test in case he gets a new infection.

Yes, had positive lft, called gp and was having Iv. Antibody that evening. No side effects, minimal covid symptoms.10/10