Update on anti-virals

[suzy1959]

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!

[SheffieldJane]

Well that’s not complicated at all! 🤪

[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 Ambassador]

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

[DorsetLady PMRGCAuk 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]

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]

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]

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 Ambassador 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]

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]

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]

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]

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. 🤷🏼‍♀️