Update on anti-virals: Like many here I was sent a... - PMRGCAuk

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Update on anti-virals

suzy1959 profile image
12 Replies

Like many here I was sent a pcr test to use if I got Covid because I could be eligible for anti-virals.

My pcr test was positive on Saturday ( having tested positive on Friday with a lft) and I got lots of texts about what would happen next, mostly promising that I would have NHS contact within 24 hours. Not that surprisingly, had no contact until Monday afternoon. This seemed to be a triage and I was told that time had probably already run out to take them anyway. I was also told I would be contacted later that day- yesterday.

No call yesterday but I did get 2 calls this morning! The most useful was from a rheumatologist. She said because I was beginning to feel a bit better, I would probably not need the anti-virals. I asked what the criteria for prednisolone were ( out of 200 calls made yesterday, only 38 were eligible). She said this varied by area but she would usually prescribe for anyone on 5 mgs or more. Some trusts were taking 10 mg as a cut off and some did not have a specific cut off.

She also said the advice has changed a bit and they are now prescribing anti- virals up to 7days after symptoms started rather than 5 days. The person who first called me didn’t seem to know this, so be advised!

All the people I spoke to said that they are inundated at the moment as so many people have Covid currently.

By the way, I spoke to my GP about a different matter and mentioned all this and he didn’t seem to know anything about it!

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suzy1959
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12 Replies
SheffieldJane profile image
SheffieldJane

Well that’s not complicated at all! 🤪

Sandradsn profile image
Sandradsn

I tested positive this morning,feeling awful.I came off pred 10 months ago,so I suppose I'm not in the criteria for anti virals,even though I was sent the pack last year.I was meant to see a rheumatologist on thursday,I've waited months..had to cancel obviously.

PMRpro profile image
PMRproAmbassador

Interesting - here in Italy my rheumy says only over 25mg. Even I don't qualify for that!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

GPs don’t seem to be involved in this exercise (?!.,, I contacted mine last week after getting a letter -been off Pred off 5 years so was interested in why I was included.

The response was they were not involved so advised to contact NHS…hahaha

Having done a bit of digging can only assume that when I had a DEXA scan in 2019 one of the factors on the report was I had RA (which is one of the reasons listed).I don’t RA, I have OA . If that hasn’t been rectified on hospital records maybe that what triggered it. Who knows!

piglette profile image
piglette

A friend on quite a high dose of pred has got Covid and has not had anti virals. He reckons he felt rough for five days.

pmrdec112014 profile image
pmrdec112014

Hi SuzyI had a similar experience on NY Eve when I was confirmed Covid-19 positive.

Again no phone call and when I followed advice in email to contact 111 after 24 hrs 111 could not help saying Dr of some sort had to prescribe antiviral.

After a few days of feeling rough I felt I wouldn't have needed any meds anyway ut they didnt know that at the time.

As far as I am aware this protocol only came out on 22nd Dec so maybe too new for me.

Abcd123455 profile image
Abcd123455

Hi, I finally heard from the hospital yesterday afternoon and was told I could have the antivirals late too as they are prescribing after the original 5days & they wouldn’t get to me in time. Now waiting for a contact to actually send them out. Not really sure by the time I get them if I should take them, really not well organised, nobody seems to know what they are doing sadly. I know everyone is working hard but I was left wondering how many more vulnerable people who can’t chase this are not getting treatment and possibly ending up in hospital. So sad.

Hopefully you will feel better soon.

PMRpro profile image
PMRproAmbassador in reply to Abcd123455

Seems a reasonable concern - because the UK hospital numbers are very high I think, Scotland is struggling my daughter says, she's a nurse. Our hospital numbers have been very stable despite increasing numbers of patients - and the antiviral medication here is far more restricted. I wouldn't be eligible for example despite being on 15-20mg for the last couple of years.

butterflyfarm profile image
butterflyfarm

I too had your experience. I am on 5mg of pred and caught Covid 2 weeks ago.The PCR test I had been sent I posted to the NHS prompting a doctor to contact me regarding anti viral tablets. As it was day 5 of my illness and I described my symptoms as just being like a bad cold he considered it was too late anyway to post me anti viral tablets, but I could go to Slough for a vaccination - I live in Surrey! However, they did let my doctor know, who texted me that they were aware of my condition if I required further help. A commendable plan, but I think it is just overwhelmed by the number of Covid cases at present. I would never criticise our NHS; they are still experiencing a very tough time and Government guidelines are very confusing regarding whether to shield or not. Personally, I was still wearing a mask everywhere before catching Covid and I certainly isolated myself for 10 days whilst I had it and did 2 lateral flow tests before re-emerging.

KerryIreland profile image
KerryIreland

I recently tested positive on a lft so I sent off the pcr test I had been sent several months before. I had a call from a Dr (NHS) who said I could have either tablets or an infusion. I explained that I was now on low dose of pred (1.5 mg) so didn’t think I qualified but she said it was length of time I’d been taking it. She also said the infusion was much more effective than the tablets, so I agreed to the infusion and went to a hospital in Slough (45 mins away). It was fine and I tested negative after about 12 days….though I still get tired if I do too much but that could be the PMR/pred!

Exflex profile image
Exflex

Like many here I was sent the Priority PCR test kits, just after Xmas in my case. I’m currently more 4mg than 4.5, and based on a neighbour’s experience you have to jump through several hoops to get the antiviral drugs; she has blood cancer. Not much chance for me, and now that BA.2 is dominant and with waning vaccine effectiveness after 5 months, and I’m not old enough for another shot - it does worry me.Some good news though, I got my Shingrix vaccine yesterday, second jab in 8w time. Nothing more than a slightly saw arm as an after effect.

Carrollee profile image
Carrollee

I got covid end of January and sent in the special pcr kit. Two days later I was called and we chatted about whether or not to have the new drugs. We decided I didn’t need it. They had recieived over 600 pcr tests from vulnerable ones but only 10% of them were invited in for the anti viral infusion. It all worked well for me. It was when it was still law to stay in so I had a call the nxt day after reporting my LFT to tell me how long I had to stay in and when I could consider going out. It seems it depends on the area. I live near Oxford. 🤷🏼‍♀️

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