COVID positive

[RZ8983DV]

After avoiding COVID for the past 2 1/2 years I felt a bit unwell today and tested positive on a lateral flow test. I'm sweating with an occasional cough. I'm in the UK. What do I do now to get access to these new drugs like Paxlovid

Dave

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[AnneHill]

I would feel the way you do. Do you have the Nhs/ Covid app on your phone? You can enter your result. I would ring 111. I think 119 is a covid phone no. I would try any. I hope you get some help.You need to tell people you have been in contact with afterwards. Anne uk

[RZ8983DV in reply to AnneHill]

I did let everyone I had been in contact with know. My GP said that because I was on watch and wait I could not get Paxlovid. I just hope i can get through it without taking anything

[Sanders9 in reply to RZ8983DV]

Hi Dave that is not correct. You have CLL and that makes you eligible

[JEEA in reply to RZ8983DV]

Your GP is wrong. I phoned my GP who immediately referred me to the team in our local hospital that give anti-viral treatments. I was phoned by them 2 hours later, and they then asked a lot of questions about my symptoms, and meds---and together we thought it would be useful for me to have it I was then phoned by the hospital pharmacy who just checked that any other meds I was on would not affect paxlovid . They then couriered the meds to my home!

[Lawand1]

Hi Dave, sorry to hear this. I’ve been there twice and the NHS reaction is getting better all the time. Three months ago I tested positive on the Friday, got the monoclonal antibodies on the Saturday and was negative by the Monday! Ph 111 straight away and they’ll swing into action! Best wishes

[RZ8983DV in reply to Lawand1]

I did call 111 and they told me to call my GP

[AnneHill in reply to RZ8983DV]

Call your consultant. Say you feel awful.

[Qwerty77 in reply to RZ8983DV]

If you register your positive result on the NHS website you should be flagged to them to receive the monoclonal antibodies/antivirals , this is done via secondary care (hospitals) through ‘COVID Hubs’,

Or, your GP can refer you to these hubs - either way, they organise the prescription and supply you the medicine

The conditions that all you to meet the criteria for these treatments are listed here:

gov.uk/government/publicati...

[Lawand1]

Hi, guess it works differently in different regions. 111 informed my Dr. Either way they’ll get what you need quickly and you’ll be feeling better soon.

[mrsjsmith]

Have you registered your positive result on the NHS website ? That should trigger a call from your nearest CMDU within 24 hours. If you don’t call GP, 111 or your haematology team. They should refer you to your nearest CMDU. But don’t say you feel fine. A friend did and then felt worse on the second day and then had a battle to get Paxlovid.

Good luck

Colette

[RZ8983DV in reply to mrsjsmith]

I sent away the PCR test which I received about 5 months ago. As the COVID test which showed I was positive was a private one bought from LLoyds pharmacy I don't think it can be registered on the NHS website, but I'll try

[mrsjsmith in reply to RZ8983DV]

I believe you are correct but worth trying. But for anyone reading this you can still order free tests on the NHS website, I forget what exactly I tick but basically you need to say you are eligible for treatment.Hope someone gets back to you tomorrow.

Colette

[AnneHill]

I hope you have had success but cll makes you entitled. You are immune compromised. 119 is a covid line but I would get in touch with the hospital. Anne uk

[RZ8983DV in reply to AnneHill]

I have got in touch with the hospital I just got passed around from 119 to 111 to the GP who said I did not meet the criteria for monoclonal antibodies as I was not on or never had treatment

[mrsjsmith in reply to RZ8983DV]

I believe they are wrong.From the NHS website’ certain types of cancer ( such as a blood cancer like lymphoma )’

‘ you are eligible for Covid 19 treatments…. If you’re at highest risk of getting seriously ill from Covid 19 ‘

Has your GP registered you as a high risk patient ? They should have.

If all else fails apply to the Panoramic study, but I believe it’s 50/50 getting a placebo.

Colette

[RZ8983DV in reply to mrsjsmith]

I believe they have but I had problems getting the 4th vaccine and had to have the haematology department overrule them. I sent away the PCR test kit which I got back in March. Hoped I wouldn't need to use it

[mrsjsmith in reply to RZ8983DV]

Let’s hope that triggers a response 🤞

[Palmetto in reply to RZ8983DV]

but Paxlovid is not monoclonal antibody! Make sure they realize you want Paxlovid.

[Palmetto in reply to RZ8983DV]

You don't ask for monoclonal antibody, ask for Paxlovid it is pills.

[AnneHill]

Sorry you havent had success. I was sure a while back this was discussed. I suppose you can take paracetamol and hope the vaccines do their job. If you get breathing trouble you will need help.I hope you feel better soon. Anne uk

[RZ8983DV]

Thanks I'm not feeling too bad at the moment

[Lady_Lymington in reply to RZ8983DV]

Dave, so sorry to hear that you’re Covid+ve. It’s awful to know that we have to fight to get the treatment that we qualify for. Good luck, and I hope you make a good recovery.

[Qwerty77 in reply to RZ8983DV]

Fingers crossed it stays that way.If it’s any consolation- a friend of mine managed to catch COVID last year when she’d had her 2nd jab (albeit 6 months ago and was due her 3rd imminently)

She’d had a kidney transplant (with raised BP) so was deemed most at risk - she was fine - hospital made her anxious as heck though, ringing her everyday saying they had expected her to be admitted!

All in all she said she had a bit of a temperature and felt like she was getting a cold for a day or so!

It would seem we are all different; I’ve known other seemingly healthy people floored for weeks

[RZ8983DV in reply to Qwerty77]

I am concerned if this drags on. I'm on my own. So far I am sweating less today than yesterday but still have cold like symptoms. I'm concerned If I do need Paxlovid the delays will mean I miss the 5 days from the start of symptoms. I'm still feeling a bit weak

[Hazel33]

I am on W&W and have just recovered from Covid. I rang 119 and told them I felt awful. They redirected the call and I was sent (by courier) Paxlovid. I can’t say whether Paxlovid helped because I ended up in A&E anyway. Hope you feeling better. HazelUK

[Tpdnotts]

Contact your nurse specialist/consultant in the Haematology clinic/dept where you are a patient and let them know. Even if you are watch and wait you are still eligible for Paxlovid. My husband with CLL caught Covid, took Paxlovid and felt much better.

[Floxxy in reply to Tpdnotts]

I did this too and they imediately informed the CMDU (based at same hospital) and I had a call back from one of their doctors. They were brilliant.

[uide3095]

I rang the doctor straight away they should put you in touch with the fast response Covid team to phone you and start the process, mine was hospitable after 2 days for infusion in my arm then back home, they should then phone a couple of times a day for oxygen levels, temperature and heart rate, then take it from there until you recover. Mine took 4 weeks and 3 lots of antibiotics, however I didn’t deteriorate but it was drawn out but my obs were good and no low oxygen levels. I was told if they drop to 93 or 94 to phone again, but if they drop to 92 to phone an ambulance! Don’t want to worry you but you need to be aware of your symptoms especially if they get worse Will

[Floxxy in reply to uide3095]

My symptoms were typical fever symptoms, hot/cold high temp at first and fatigue. i could cope with them. After 10 days I had HORRENDOUS night sweats and very severe breathing difficulties. My consultant and CNS were brilliant. It took 3 months to feel 100% again.

[bennevisplace]

Register your positive lateral flow test result on the NHS website.

Call 111 again and report you have a positive result. You don't need to wait for the PCR test. Have your NHS number to hand so you can be identified as having CLL and candidate for antivirals etc (Paxlovid is first choice). Stress that you are feeling unwell and describe the symptoms.

You are definitely eligible for antivirals. Your GP is wrong and should be censured for professional ignorance. Here are the guidelines, keep them beside you for later telephone discussions

healthunlocked.com/cllsuppo...

[Elliot43]

Last week I just tested positive to covid on a RAT. I rang my Heamatologists as advised by him, and he got back to me fairly quickly. He asked me what meds I was on ie stats and aspirin. ( I had to stop taking these for a while)The script for Paxlovid was sent to my pharmacy who promptly delivered it to my door. Brilliant service.and although I was pretty sick to start with the AVs certainly shortened the length of time sick. I tested negative on day 6.

I could have got a script from my gp but they were a little slower with a consult like the next day. Get them quickly as they are well worth it

Sheila in Oz

[RZ8983DV in reply to Elliot43]

I wish I could. Anything to shorten the duration of this illness would be appreciated. Since they stopped giving out free tests I have been paying for private RAT tests whose results cannot be reported on the NHS website. The attitude here has been to stop masking, social distancing and saying that the immunocompromised can get the new antivirals, if they catch it but my GP says I can'tr be referred to get them as I only on watch and wait

[bennevisplace in reply to RZ8983DV]

While waiting for the PCR test result to come back (this may take too long), can you grab a NHS lateral flow test kit from a neighbour and register the result?

In any case, you can report the result of your initial LFT test to 111 and describe your symptoms. There is no doubt you have Covid. 111 should alert the CMDU who should get a doctor to call you and go through the relevant questions before deciding what to prescribe. This is when you need to be able to quote the guidelines england.nhs.uk/coronavirus/...

The ONLY valid reasons to withhold treatment with early-stage antivirals/ monoclonals are:

EITHER more than 7 days have passed since symptoms began (Remdesivir is the only option between 5 and 7 days),

OR your symptoms are clearly improving,

OR you have become so ill that you have been hospitalised.

Good luck.

[RZ8983DV in reply to bennevisplace]

I already have received NHS lateral flow tests from a friend. In a panic to send it off I didn't register the PCR test on the NHS website. I have done so now. I wonder whether I should get in touch with the CDMUs in my area directly

[mrsjsmith in reply to RZ8983DV]

Do you have the contact details. There was a link to the list here some time ago.

[bennevisplace in reply to RZ8983DV]

I didn't think you could contact them. I think the CMDU calls you, after you've got the ball rolling with either your GP or 111.

[Vakraas]

Hello Dave,

Be prepared to do battle with the NHS to get those antivirals. When I came down with Covid for the first time at the very end of June, I had to fight really hard. I first called 111 on a Friday afternoon, the day I tested positive, and they said they'd refer me to a CMDU and I should hear back within 48 hours. But in the end it took multiple calls to 111, several calls to my GP, a misdirected call to 119 (do _not_ call 119), an e-mail to a local hospital, and a couple of calls to my haematologist before the antivirals turned up on day six - and they have to be administered before day 7.

While each branch of the NHS was (mostly) lovely to me, there was very little connection between the different branches. They also often contradicted each other, with my GP swearing that they couldn't refer me to the CMDU, and both 111 and the CMDU saying they could. Given that Dame Dr Helen Stokes-Lampard, former chair of the Royal College of GPs, knighted for her service to general practice, is a partner at my GP (and in the aftermath of the mess, called me personally to apologise over the trouble I'd had sourcing the antivirals), and even _she_ didn't know that GPs could refer patient directly, that speaks to something of a communication breakdown in the system.

In the end it was the nurses at my haematologist who where most helpful, and who seem to have resolved the issue, but it proved very difficult for me.

Others have had a more positive experience, of course, so my experience isn't necessarily universal; but in some cases it does go wrong.

And yes, you're eligible on Watch & Wait. I'm on W&W, and no one questioned my eligibility. It was the process of acquiring the antivirals that was the problem.

Finally, the antivirals do seem to have helped.

[mrsjsmith in reply to Vakraas]

It’s sadly all a bit of a big mess. From what I have read the system is fairly non existent at weekends. When I spoke to my GP about the system she said she couldn’t refer directly but the ERS ( electronic referral system ) in the surgery could trigger a referral.

Colette

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Feel better!!!

[Palmetto]

Hi RZ did you get help? How are you?

[RZ8983DV in reply to Palmetto]

I am still sweating on and off and feel about to sneeze. I sent the PCR test back to Test and Trace (I think) and they said someone will call me today and maybe they can arrange for Paxlovid which the GP refused to prescribe. At times I feel OK but still weak but at other times I have a fever. Thanks for your concern