covid

[Ana-16]

Hi all

Have just tested positive for covid. I’ve managed to reduce steroids to 2mg per day. Should I now increase the dose. I’m waiting to hear from a clinician about anti vitals

Thank you

[DorsetLady PMRGCAuk volunteer]

That’s a pain!

This link gives advice re covid -

medicinehealth.leeds.ac.uk/...

[Ana-16 in reply to DorsetLady]

Many thanks. That’s really useful. I’ve had a couple of rough days and nights but only tested positive today. I haven’t increased prednisone dose but will follow advice. I feel ok ish but definitely more tired. I’m now waiting for a call back from 111 clinician re anti virals. Best wishes

[PMRpro Ambassador in reply to Ana-16]

I'd ask the 111 clinician - depends how unwell you become really.

[Ana-16 in reply to PMRpro]

Just had a call from clinician/nurse who knew nothing about steroids and sick day rules. “Where did you get that?”she asked. I just said “endocrinologist”. So she said go ahead with that. I’m now waiting for another assessment from the hospital that distributes antivirals possibly another 24 hour wait. I’m not complaining because I don’t feel too bad. Fingers crossed

[PMRpro Ambassador in reply to Ana-16]

As I said yesterday, the red emergency steroid card was introduced because endos were worried about the lack of awareness of HCPs when it came to long term steroid users when ill. Brilliant idea - awful execution because they haven't made sure they know about it ...

[Ana-16 in reply to PMRpro]

Absolutely as was demonstrated today

[Hunter134 in reply to Ana-16]

When I had covid I was told I couldn't take antivirals due to it affects kidneys.Never red flagged on kidneys.

[Ana-16 in reply to Hunter134]

That’s interesting. Where are you? Who told you that antivirals might impact the kidneys. I haven’t seen that anywhere

[Hunter134 in reply to Hunter134]

I live in Canada.Luckily the covid was manageable but I did end up on antibiotics.I had a lot of mucous in my lungs.It was a nurse practitioner so I was never told why.

[Ana-16 in reply to Hunter134]

That’s interesting. Glad you recovered. I’m still waiting for distributing hospital to call

[PMRpro Ambassador in reply to Hunter134]

And Covid doesn't?????

[nallufl24]

Is that just a UK thing? I had Covid when I was on 10 mg pred and monthly Actemra infusion. I never changed anything. I wasn’t due for my infusion for a couple weeks but I never changed my prednisone dose. My doctor never mentioned it and neither did I. I took Paxlovid and was fine after 5 days.

[PMRpro Ambassador in reply to nallufl24]

There are similar advisories from endocrinologists in the USA too. The level of awareness is leading to deaths when patients aren't recognised as having adrenal insufficiency problems and they go into a crisis.

[nallufl24 in reply to PMRpro]

Ok. I get it.

[Ana-16]

I suppose the need for sick day rules will depend on the severity of the infection. Not just re Covid but anything that might compromise adrenal response.

[TheMoaningViolet]

Hi Ana, I was on a similarly low dose when I had Covid in June last year and as my symptoms were very mild (just raised temperature and accompanying headache for 3 days) I didn't change my dose and the antivirals were not offered. I hope you feel better soon.

[Ana-16 in reply to TheMoaningViolet]

Thank you so much for responding. I haven’t yet heard from the hospital which is to decide about antivirals. Had a better night with little coughing but it’s back now

[Exflex]

Covid positive 12 months ago with a cough from hell, elevated temp etc, on 4 or 5mg pred (can’t remember precisely) I was flatly denied antivirals because I was on less than 10mg. I read that AVs need to be taken within first 5 days to have benefit.

[Ana-16 in reply to Exflex]

Thanks for the reply Moaning Violet andExflex I just heard from the hospital and it seems I no longer qualify for antivirals I need to have been on 20 mg of steroids for three months. Ah well I’ll just carry on coughing and hope for the best

[Myfoe]

I tested positive for Covid in March I was at 12mg prednisone and 25mg injections of methotrexate I was advised by my rheumatologist to stop methotrexate for a week and was given paxlovid it was a rough 10 days

[Ana-16 in reply to Myfoe]

It seems the guidelines are changing

[DorsetLady PMRGCAuk volunteer in reply to Ana-16]

Is that just your opinion, or have you seen anything in print? If so can you link it please…

[Ana-16 in reply to DorsetLady]

It was more by implication in what she said. “No you don’t qualify “ and when I said that I’d been told that I was vulnerable and therefore eligible she said things had changed. She said if I had been on higher dose of steroids I would have been hospitalised She gave me the name of a website I could look at if I wanted to go ahead and try to get antivirals - panoramictrial.org

[DorsetLady PMRGCAuk volunteer in reply to Ana-16]

She is correct in that you need to be on a higher dose of Pred to get antivirals through NHS…. and have previously seen the website you mention. You can apply to join but not sure what the criteria in terms of dosage is though, might be worth a try if only for research purposes… but it probab7depends on how rough you feel…

[Ana-16 in reply to DorsetLady]

That’s interesting. When covid started I received all the info telling me I was vulnerable etc so would have antivirals and I was sent copies of the leaflets detaiming each drug. . My gp said that apart from steroids as I was/am still on Letrozole post b cancer I was even more at risk. Anyway things change. Without wanting to sound cynical I wonder if finance is now a consideration I just hope things don’t deteriorate. I don’t feel too bad apart from hacking cough. My gp has sent antibiotics for me in case …

[DorsetLady PMRGCAuk volunteer in reply to Ana-16]

I’m sure finance is coming into the equation -the government threw money at covid early days -now they can’t.

Hope abx work for you 🌸

[Ana-16 in reply to DorsetLady]

Thank you Dorset Lady. I just need to decide when /if to take them

[Tiggy70]

I think there is a link between taking Paxlovid and the kidneys. When I got Covid in July 2022 I was put on a half dose of Paxlovid because of my kidney issues. I felt a lot better after 5 days and actually tested negative. Day 6 I went downhill again and tested positive again. It’s called Paxlovid rebound. It was another three weeks before I began to feel better.

[Ana-16 in reply to Tiggy70]

Oh dear. That sounds rough. Hope you’re fully recovered

[Tiggy70]

Recovered from Covid thankfully but like many of us still trying to get my head around the vagaries of PMR !

[Spartans1]

I did take Paxlovid when I tested positive. I think I was about at 8 mg of prednisone. I feel like it really helped and had no side effects.

[Ana-16 in reply to Spartans1]

I think if I’d been given the option I too would have taken it.