Covid, covid test and tapering

[waltztherapy]

Very slow tapering (DL style and working well) currently at 5mg prednisolone. Just into my 3rd year PMR diagnosis, when I contracted covid. Staying put at 5 mg now. PMR bouts of fatigue and sleepiness much worse this time though just starting to improve a little. not the case on my previous covid infection at a higher dose, at least a year ago. Keen to get out and about again, but test still positive after one week.Would like to hear of similar experiences and any advice please. Many thanks.

[DorsetLady PMRGCAuk volunteer]

Stick at 5mg then - unless you feel really rotten when you can introduce the sick day rules, but hopefully that won’t be necessary.

Would say some of the fatigue is your adrenals struggling with added influence of Covid…so just take things easy, and don’t be in any rush to taper… staying put at current dose will give them a chance regroup as well.

Hope you soon feel better.

[waltztherapy in reply to DorsetLady]

Thankyou so much DL. much appreciated. X

[PMRpro Ambassador]

Even when the test is negative don't rush out and about immediately. It can take weeks to recover properly.

[waltztherapy in reply to PMRpro]

Thankyou x

[SnazzyD]

I’ve had Covid a number of times now and I’d say they have all been different in terms of dominant symptoms, length of acute symptoms and lasting effects. I have noticed that light symptoms didn’t necessarily mean quick recovery. So I’d say don’t judge this bout by your last. I would say the same about how much my adrenal function came into play; that was unpredictable too.

It is difficult to know if what is the Covid and what is low cortisol if at all. All I can say is what I’d do if it were me. If you are improving albeit slowly, I’d probably stay put on dose but really rest. If you find you start to feel completely empty and dizzy when you stand up, I might consider a couple of mg and bed rest for a day. If that isn’t working do a sick day dose which might give you an idea what’s what.

[waltztherapy in reply to SnazzyD]

You describe my position/feelings exactly, thankyou SnazzyD. And thankyou for suggested course of action. Now following your first suggestion. If it becomes necessary, what is a sick day dose please?Thanks again for this wonderful group support everyone x

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

See this reply I posted to another member today -.

healthunlocked.com/pmrgcauk...

[Pixix]

I am on Day 10 of Covid, still testing positive, & have been very unwell with it throughout. This morning it was just like my first symptoms starting all over again, when I thought that part had finished. I read up & found out it can happen between the 7th & 10th day. Breathing is hard. At the same time I have a nasty bout of vertigo,bringing bad sickness. The weekend before it started I had C.Diff…caught at the ward my husband was in. They closed his ward, no visitors, hard to find anybody to answer a phone to tell me his progress. They told me there was no way they would discharge him home to a Covid filled house last Thursday. But on Friday they put him in a taxi in his nightclothes (was admitted by ambulance) & sent him home for me to look after! He has pneumonia, sepsis & renal failure in the ten days he was in. I paid £80 for my booster this year, & all I can say is thank goodness I did. If this is a light dose of Covid then without vaccination I’m sure I’d be in hospital now. Hope you are better soon, S x

[PMRpro Ambassador in reply to Pixix]

Get well soon - both of you.

Sounds like left hands and right hands and a complaint is justified.

[Pixix in reply to PMRpro]

I think so. I tried to private message you to get your thoughts, but each time I typed a lot then lost it & was too sick to try again! The nurse said nobody told her at handover that I had Covid (I reported it on day 1 & they tested David, & then told whichever nurse I could get each day that I was worried they’d discharge him here). Each day they reassured me & said they would talk to me first. On Friday the nurse in morning said they weren’t discharging him that day (but he told me he was…but he’d beeen confused & muddled so I thought he was rambling again). Told to phone back I’m afternoon, by which time they’d done the discharge papers. Only time they rang me was to ask me to talk to David as he kept packing his bags & trying to leave the ward…but to me he ordered me to go & fetch him, was rude, terse, angry & slammed phone down). I had to run round the house wiping & cleaning surfaces, as one nurse suggested, & ended up really Sick that evening. I’m sleeping on the driveway in the motorhome & spend each day on the patio. If inside I wear an FFP3 mask. The discharge was upped to the Sister, then the Matron & then a Dr who said David has had his booster, therefore no problem discharging him! I roughly typed it out one night, & thought about complaining just so it doesn’t happen to others…but did they do anything wrong?? Your thoughts appreciated. I test daily…but even when negative i coukd still be infectious somebody told me? Sorry, more relevant is that my Dr recommended me for antivirals. It took a day & a half before the guy range me, & then told me Govt rules had changed & I had to be on 20mg pred for 3 weeks to get antivirals. No mitigating factors swayed his mind. The dr at our surgery (not my normal one) said there was no point at all in increasing my pred to help. It wouldn’t help at all. That’s the PMR bit, sorry the rest is off topic & I apologise!! It’s pouring with rain tonight & im going to have to eat in lounge at other end from David with no mask. I dread him getting it, I can’t nurse him now, even. S x

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

So sorry to hear this tale of woe.. not good enough support for David from outside agencies.

No real advice, just a gentle hug. 🌸.

[Pixix in reply to DorsetLady]

Thanks so much, hugs are really welcome just now, that’s lovely. S xx

[PMRpro Ambassador in reply to Pixix]

If he's just had sepsis I really don't think risking Covid immediately even if he has had his jabs is very intelligent and given your own medical history I don't think you should be expected to provide care - as you say, you can't. Been there, done that and I was nowhere near as unwell as you are and certainly didn't have Covid. It almost finished me physically and mentally.

To be fair, I think it is more likely that testing positive and NOT being infectious is more likely than the other way round and the usual cut-off is about 10 days, but you don't know. And to be honest - I'm not sure the GP was right about the pred. I bet he didn't take adrenal function into consideration.

The NHS is on its knees but even so, they do usually make sure decent care is in place before discharging.

Hugs from me too.

[Pixix in reply to PMRpro]

I. Agree re adrenal function, & would have followed sick day rules, but I wasn’t a happy bunny at 5mg, & don’t want to go back there even for a short while if I can avoid it, but yes, the Dr was wrong, I agree. If I’d got much worse I would have upped the pred &bphoned my own Dr, & put a post on here. It was lovely knowing you’d be there (& Dorset Lady, too) if I needed you)! Um, testing positive but not being contagious, I like that. Will give it until Monday, as long as I’m able to cope. Yes, David had urosepsis, then pneumonia & then an acute kidney injury. Having blood tests to check his kidneys again tomorrow. Thankfully, surgery is near & he says he feels OK to drive. I admit to being pushed to my limit, mentally, last week at one point, & a bit this week. Physically…I don’t even think about it now. Just do what I can do to help. Thanks for the hugs, much appreciated, S xx