Covid antivirals if you're immunosuppressed

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Has anyone got recent experience of getting antivirals for covid if you're immunosuppressed? DH is on immunosuppressants, I am having chemo and we've both tested positive. We've been through 111/hospital triage and are now waiting for a call back from the local covid antiviral team. I'm just wondering how severe our symptoms need to be in order to get the antivirals, what they might prescribe, and whether they're going to be able to deliver them to us. DH has a fever, fatigue and feels pretty rotten. I actually feel ok so far but I think I've only just caught it this morning and the worst is yet to come. I'm worried if I answer honestly I won't get anything and then I'll have missed the window if I get worse later? There's also no way we can get out to pick up any drugs, but if they're going to stick them in the post I'd see if a friend could go and get them for us. Just hoping someone here might have recent experience to fill me in while we wait for the call back!

It didn't used to be symptom driven, just if you were eligible you got them. I don't know if this is still the case. DH had them in Feb 2022 & never really developed any symptoms (although he did carry on testing positive for weeks & weeks after stopping treatment).

Yep. I contacted 111 to say I was positive and CEV and fairly quickly received a call. I nipped to the hospital to get pills (Paxlovid) and they also gave me one of those little finger devices to measure my oxygen levels.

It was all pretty quick.

Oh and should have said, they told me if me or someone else couldn't get them for me, they would send them immediately in a taxi.

I contacted my GP who referred me to local hospital infectious diseases department.

The consultant phoned me the next day sent antivirals by courier a few hours later.

The algorithm of who is eligible changes frequently. Good luck.

@HelpMeGetThrough that is so reassuring, thank you so much!

@LulooLemon also reassuring, I will keep my fingers crossed!

Still no phone call for either of us and we're very ill now, along with out two young children. Very stressful!

It's because it's Sunday. Can you chase it on 111 today or with GP first thing tomorrow? Good luck OP x

Any luck, OP?

Hi there,
I'm currently having experience of trying to get antivirals, and unfortunately it's not been a good one so far. I'm currently on active chemo and tested positive on Sunday. I called the Chemotherapy emergency number and they advised to call the CMDU to issue antivirals. CMDU said they would contact me within 24hrs.By the next day I was feeling quite poorly and spiked a temperature of 38.1. So was asked to go into the Macmillan Acute Oncology. They did the usual tests, bloods etc and by the end the doctor I saw said he would issue me antivirals to be sent to my home in the morning, and to chase it up if not there by midday. Midday comes and they've not arrived. So I contact acute oncology and CMDU to chase up. Oncology were no help at all, and could only advise me calling the hospital pharmacy. Hospital pharmacy said wasn't anything to do with them. CMDU didn't know anything about it, and asked me who the doctor said to chase it up with. I said he didn't say, and her response was just that's not very helpful. She also said it was an error on the doctors part to say they would prescribe them. To cut what could be a very long story short, I have made 30 phone calls in total to the hospital, CMDU, pharmacies, my GP etc trying to get hold of them. Basically I have been doing their job of ringing around trying to find some. They are also expecting me now to collect them myself. Bearing in mind I'm supposed to be isolating, and feeling unwell. If I don't receive them by tomorrow, then I will have missed the 5 day window. Apparently it's only Boots pharmacies that can have them. So I've been ringing around all day yesterday and today. One said it was classed as an amber product so would take 5.7 days.... which by then would be useless. I now have a prescription sent to two different Boots pharmacies. One of them said this morning that it was on the way and would send it to me if it got there before their delivery driver. I then received another phone call from them to say they now don't have it as limited stock 🤷🏼‍♂️I contacted CMDU again, and they sent another prescription out to the another pharmacy, incase they had it. CMDU said to check if they got it after half an hour, but I couldn't get through as not answering the phone. I took it upon myself to phone around and have managed to locate some at a pharmacy quite far from where I live. However they won't prescribe them until the other pharmacy release the prescription. But said pharmacy are not answering their phone, so I can't contact them. It's just a ridiculous and unnecessary situation, and in the meantime I'm getting other symptoms that I may not have had, had they given me the antivirals on time. Also, just to put in context I suffered with severe health anxiety and depression following my first bout of chemo. A lot of my anxiety was based around the fear of catching something like covid whilst on chemo. Due to my breakdown I was admitted into hospital for quite some time, and also attended a private clinic for therapy. I am thankfully better now, and have returned to work after a year off. I work in a school which is where I caught covid.... no surprises there! Sorry I can't offer a more positive experience, but I thought it's good to also share the not so positive experiences incase there's anyone else out there going through the same. Hopefully not!

@Ma2307 Oh goodness, that is an awful catalogue of incompetence and miscommunication.

Please persevere with the phone calls until you get the prescription. If you manage to get the prescription and pharmacy coordinated, is there someone who could drive and collect it for you?

Last time with Covid, my experience of getting antivirals was similarly farcical to yours and I received them on day 6, which is officially too late.

This second time with Covid I was lucky to have had a positive experience. I have nearly finished taking the 5 day course of antivirals and they are working well.

But both times I really had to advocate for myself (whilst feeling very ill) which involved actually arguing my case with medics and administrative staff. Someone less able would not have managed.

I hope you get your medicine and start feeling better soon @Ma2307. 

I am immunosuppressed and was very ill with covid first time round, before anti virals.
Caught it again last year and had a discussion with the hospital about anti virals. They were happy to prescribe but warned me they were not without problems. I decided to say no and didn’t regret it because I never got very ill. However this may be because I gained immunity after that first dose of covid. If antivirals had been available then they might have kept me out of hospital.

My advice is if you are immunosuppressed and eligible for anti virals, try to find out what the process is BEFORE you test positive. Like other PPs our experience was a shambles so the five day window was missed. Testing positive at the weekend didn’t help, so tried out of hours GP, registered positive test and eligibility on the nhs site, called shared care nursing team and called GP on the Monday.
Shared care voicemail said not an emergency service and messages are checked every 24-48 hours mon to fri. Out of hours GP and GP said no idea what the process is - wait for shared care nurse to call back. And the call back from the logging on line NHS never came.
When finally the shared care nurses checked the voicemail and the anti viral team called, the doctor said oh if it’s day three or four already, let’s just leave it you’ll probably be fine in a few days. This was only after he’d established the tablets weren’t an option due to other drugs interacting - so it seemed arranging for a day admission for infusion was too much bother
Given that the anti viral unit (in our city anyway) is open 7 days a week into the evenings, Its astounding that the GPs of the eligible patients can’t just let them know in advance “this is the number you call if you test positive mon to fri and this is the number sat or Sunday - you will then be referred on to the team”. Just a shambles.

That is good advice! I forgot I'd posted this but in case anyone else comes across it I'll let you know how our experience was.

I am having chemo and have a number to call if I'm unwell which I did when I tested positive. My team contacted the local covid team and I got a call from them late in the evening. I wasn't too unwell at that point (and it was still Day 1) so they told me they'd phone back in 24 hours to see if I felt I needed the antivirals. They phoned back 24 hours later, I felt worse, so they sent the antivirals out. They first did a very thorough check of whether I could take the tablets, including getting email confirmation from my cancer consultant about the potential interaction with my chemo drugs. I got the tablets delivered by courier the next day (Day 3), and I recovered a few days later.

My husband is on immunosuppressants for ulcerative colitis and he went via 111. They said they contacted the local covid team but he never got a phone call. By Day 3 he was very ill and we had to call an ambulance. They also contacted the local covid team and said he'd get a phone call back. But he never did. He finally got a call on around day 7 or 8, far too late for antivirals, when he was already recovered. We never really found out why it took so long but I guess he was considered a lower priority than me!

@namechange0998776554799000 Interestingly my husbands cev status is also because of immunosuppressants due to ulcerative colitis. So maybe it’s as you say and it’s not classed as a big priority - hence the anti viral doctor not prescribing anything when he did eventually call!