Post Covid : Good morning all . It has been almost... - PMRGCAuk

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Post Covid

Greensleeves profile image
46 Replies

Good morning all . It has been almost 3 weeks since I caught Covid and ended up in hospital. I’m almost feeling human again but much of it is a case of having to get on with it . I’ve lost loads of weight, have no energy and I’ve gone off my life saving cups of tea .

I upped my Prednisilone from 3mg to 10mg , with a boost of dexamethasone whilst in hospital.

I know I’m not well enough to reduce from 10mg yet but would be grateful for any advice on getting the dose back down quickly when ready . I really don’t want to do a slow taper , but will if you think that best . I’m happy to get to 5mg for now . Best wishes all xx

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Greensleeves profile image
Greensleeves
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46 Replies
Coffeebeans profile image
Coffeebeans

Morning Greensleeves

I'm sorry I'm no expert on a taper after being ill just wanted to ssy I'm glad you're on the mend, even if it's slow.

I'm having my morning cup of tea and was just thinking it tasted good today (usually things taste rubbish for me with pred). I hope that comes back for you quickly! It's the little things isn't it.

Take care and keep things steady if possible.

CB

Constance13 profile image
Constance13 in reply toCoffeebeans

Don't reduce at all till you feel 'much' better. What are a few grams of pred in the long run? You've been through one of the most dangerous illnesses of our time - celebrate that by spoiling yourself. Have you any espresso cups? Try sipping a cup of your favourite tea through one of those - taking it slowly may bring back the "life saving" feeling.

Hugs and "congratulations" - you made it. 👏👏💥💐💐🍀🍀🍀

Greensleeves profile image
Greensleeves in reply toConstance13

Thank you so much Constance , I’ll sit tight and wait .

Feeling much better is some way off yet .

I’m not a patient person and do like to have a plan . I’ve been taking Prednisilone for so long now , and to be honest I think the fact I was dragging myself along on 3mg was silly . I do have espresso cups , I’ll try that . Hugs to you too ❤️😊🤗

Constance13 profile image
Constance13 in reply toGreensleeves

"Having a plan" with PMR is almost impossible. We are all sooo different. The most difficult thing to get your head round is "acceptance" - your life is not as you'd planned it. PMR is a pesky illness, but it isn't life threatening - there definitely is a light at the end of the tunnel.

Greensleeves profile image
Greensleeves in reply toConstance13

Yes you’re right Constance , I must accept it. There is a light at the end of the tunnel. Have a lovely day xx

Greensleeves profile image
Greensleeves in reply toCoffeebeans

Thank you CB , I loved that first morning cuppa . I didn’t lose my sense of taste or smell , but just can’t drink tea anymore. Hopefully it comes back because yes it is the little things . I always said I couldn’t live without tea . Take care

Greensleeves profile image
Greensleeves in reply toCoffeebeans

Thank you CB enjoy your cuppa and take care xx

123-go profile image
123-go

Hi Greensleeves. So pleased to know that you're feeling somewhat better. It may take some time to feel more like your usual self and you shouldn't try to hurry that. One step at a time with lots of rest.Attempting to reduce 'quickly' from 10mg is really not a good idea. You've got this far: don't undo the good work that has been done. Advice on tapering will be coming along. Take care.

Greensleeves profile image
Greensleeves in reply to123-go

Thank you, I’ll hold at 10mg for now . We don’t know the long term effects of Covid yet , and it was horrendous. Every day it brought something new .

My lungs , heart and digestive system were the worst. I kept notes , and can’t bear to look at them.

Bless all those who have had it and our wonderful NHS . Take care

123-go profile image
123-go in reply toGreensleeves

How dreadful for you! You most certainly need lots of TLC now. I'm sure your family will be supporting you through your recovery even though that may be remotely. I agree- the NHS with its dedicated doctors and nurses working so very hard is a wonderful thing. Take care. Before we know it the Spring will be here 🌼🌹🌸🐥.

Greensleeves profile image
Greensleeves in reply to123-go

Can’t wait for the Spring. Our NHS have been and are amazing.

Take care xx

Kendrew profile image
Kendrew

Although I don't know you personally, I'm genuinely so happy to hear that as one of 'our gang' you've managed to overcome covid-19 and are now recovering safe at home. Congratulations. I'm most definitely not one of the medical experts here but one of the things I have learnt, is that in all things to do with PMR/GCA.....slow and gentle is best!

Good luck with your continuing recovery Greensleeves.

Greensleeves profile image
Greensleeves in reply toKendrew

Hi Kendrew thank you for your kind words it means a lot .

I will take it slowly , my poor little body has had quite a shock .

I can’t quite believe I’ve come out the other side . I feel genuinely scared for anyone going through it , it’s HORRENDOUS , and yet some people get a mild case and bounce back. I think long term steroids and PMR caused it to hit hard , every day it brought something new .

If it wasn’t terrible earache it was vomiting or a very sore throat and all along in the background you’re struggling to breathe and your heart is doing summersaults . It’s vile I hope everyone gets vaccinated as soon as possible.

Take care xx

I’m with @Kendrew on this. Great to hear one of us is recovering post COVID. I hope the recovery continues.

Greensleeves profile image
Greensleeves in reply toDogAgilityObsessed

Thank you ever so much 😊.

MrsNails profile image
MrsNails

Morning GS

Glad to hear you made it out the other side 🙏🏼

You may find you will need to taper, Slow n Steady may have to be your Mantra......

Take Care 🌸

MrsN

Greensleeves profile image
Greensleeves in reply toMrsNails

Good morning Mrs N ,

Thank you 🙏, I’ll have to be slow again. Never mind.

It’s not the end of the world is it .

Have a lovely day and take care xx

Jan_Noack profile image
Jan_Noack

me too, so glad to hear you are recovering and no idea re the taper. The usual "rule" I think is if you raise for two weeks you can do a fast taper and at MOST a month..after that the slow taper, so though I do not know what I am talking about here I'd guess take it slow? but if you try to taper back to 5mg faster, only when you are feeling better, and it works..then it works for you. Funny about the tea though. I do so know what you mean by life saving!

Greensleeves profile image
Greensleeves in reply toJan_Noack

Hi Jan ,

I think it will reach a month but I’m being silly and it’s safer if I do the slow taper again.

Tea was everything to me , it solved almost everything that came my way. Apparently my grandparents even put it in my bottle .

Have a lovely day Jan xx

MrsNails profile image
MrsNails in reply toGreensleeves

GS

When l was on Chemo that’s all l longed for was a decent Cuppa Tea - the Registrar on the Ward said if he had a £1 for every patient that said that he’d be a rich man! 😂

Greensleeves profile image
Greensleeves in reply toMrsNails

Oh bless you Mrs N , you’ve been through the mill . I hope you’re better now from that .

I do hope I can enjoy a decent cuppa again.

Lucozade is like nectar at the moment . I just want normality and that’s tea 😂 xx

MrsNails profile image
MrsNails in reply toGreensleeves

It’s over five years ago now 🙏🏼 but a decent cuppa tea is the answer to most things!

I’m very fussy about my tea 🫖 you will, it just takes time.

Get Well Soon 🌺

Greensleeves profile image
Greensleeves in reply toMrsNails

You’re a wonder Mrs N . 🙏.

I’m fussy about my tea too .

I’m enjoying lying on the sofa and looking at the sunlight.

Take care xx 🤗

maria40 profile image
maria40 in reply toGreensleeves

Your grandparents might have seeded an early - but harmless - addiction. I remember being given coffee, my mother's favourite drink , in milk, when I was very small and been with me for life though it now has to be decaff, sadly.

So glad you're recovering, take it easy and be kind to yourself, you deserve it.

Just a thought - could your going off tea be because your taste/smell were affected by Covid?

Greensleeves profile image
Greensleeves in reply tomaria40

Hi Maria ,

I used to love a milky coffee around 11am , haven’t tried it for years .

I’d say I was /am definitely addicted to tea , but it makes me nauseous at present.

I’m glad to say I didn’t lose my sense of taste or smell.

But my cravings are for very different foods and drinks.

Lucozade, Pringles and mint ice cream . Yum 😊.

Take care xx

PMRpro profile image
PMRproAmbassador in reply toGreensleeves

I had measles very badly as a child and was given Lucozade to "build me up" - it certainly built me up, I'm sure that was the cause of my weight problems all my life. But mint icrcream - now that I could join you on!!!

SnazzyD profile image
SnazzyD

That’s good you’re feeling better, it goes the other way for so many. What I will say as a long hauler after a Covid like illness with all the trimmings in March is that this is very early days. I was fairly rubbish for 7 months with relapses every few weeks. Be ready for bumps in the road while hoping that you are one who pops out the other side like plenty of others.

If it was me I would not be doing a quick reduction because you don’t know what has happened to your adrenal function in the three weeks+. Your body is still dealing with the aftermath so make it as easy as possible. Plus, if you get poor adrenal function you have no idea if symptoms are long Covid or adrenals if you get the non-specific malaise etc that is common to both.

The other thing is that you are only three weeks in and Covid is known to be involving Interleukin6 which is also our nemesis. Long Covid has been thought to be triggering of inflammatory substances in response to either shedding of old viral material or an immune system firing on its own troops (sound familiar?) long after the virus has shipped out. Therefore I’d not be running from the folds of Pred too readily by reducing too fast.

Anyway, that’s my non medical take on it.

Greensleeves profile image
Greensleeves in reply toSnazzyD

Hi Snazzy ,

I’m so sorry you had it back in March and you’ve got long Covid . It can go on and on .

I enjoyed reading your reply .

I’ll read it again and return to it after looking up Interleukin6 .

I know I’m not out of the woods yet . I can feel it .

Do you know one of the doctors at the hospital told me whoever was responsible for Covid are very wicked people ! I wasn’t well enough to expand but they said they’d got patients who it was affecting neurologically and giving them strokes . Scary stuff whatever it is .

I don’t think my adrenals had picked up pre Covid . I was a very silly woman with hindsight. I obviously still am if I’m asking for quick routes back to 5mg at this stage .

I hope you feel much better sooner Snazzy . Big hugs to you x

Songbird69 profile image
Songbird69

Well done for coming out the other side of this horrid virus.There was an article on one of these threads recently “Sick day rules for Covid and other illnesses - increasing Pred short term” I kept a copy but can’t find out how to add it here. Sorry. If you search the threads I am sure you will find it - or someone more technologically equipped will be able to!!

MrsNails profile image
MrsNails in reply toSongbird69

leedsth.nhs.uk/assets/be1c3...

Greensleeves profile image
Greensleeves in reply toMrsNails

Thank you again Mrs N xx

Songbird69 profile image
Songbird69 in reply toMrsNails

Thank you. Technology and me aren’t a match made in heaven!

MrsNails profile image
MrsNails in reply toSongbird69

Just ask if you’re ever stuck, we can usually work it out 🙃

Take Care & Keep Safe & Well x

Songbird69 profile image
Songbird69 in reply toMrsNails

.... and you. X

Greensleeves profile image
Greensleeves in reply toSongbird69

Oh you’re great, I’m not very technical I’m afraid xx

Greensleeves profile image
Greensleeves in reply toSongbird69

Hi Songbird,

Thank you, have a lovely day xx

PMRpro profile image
PMRproAmbassador

Oh no - no tea? Woe, thrice woe! I just can't imagine it - she says, grabbing the tea next to her - but OH gave up tea some months ago, must be the taste there too.

Wonderful you have come out the other side but there is probably a bit to being out of the tunnel and into the light. Snazzy has already said everything I would have - so I'll just say get properly well very soon.

tangocharlie profile image
tangocharlie

Might be worth your doctors speaking to Dr Mackie in Leeds who wrote a guide to increasing Pred if you get Covid?

Greensleeves profile image
Greensleeves in reply totangocharlie

Thank you TC , my GP should be ringing next week, I’ll ask him .

Do you mean I could potentially increase it more than I have ?

TheMoaningViolet profile image
TheMoaningViolet

Hi Greensleeves, so glad to hear you are on the mend, what a frightening experience. I hope everyone else is fine as well. I suspect that how quickly one can reduce the steroids following a significant illness will be different for each person.

The first story I've heard of someone with PRM who got Covid and ended up in hospital had an encouraging ending. The patient was put on 10mg for a couple of weeks, up from 6mg, and as soon as he recovered from Covid, he was back to 6mg with no associated problems. I am sure that the duration of the higher dose will play a role as well as the age and severity of the infection (this patient was in his 70s I think). I do wish you to regain your strength an recover as quickly as possible. You were at 3mg before, you will get there again. Vx

🤞

PMRpro profile image
PMRproAmbassador in reply toTheMoaningViolet

Petros you mean? well into his 80s, just checked, 88.

TheMoaningViolet profile image
TheMoaningViolet in reply toPMRpro

I can't remember his hame, but you could be right. He is a Londoner and I attended one of the meetings where he talked about it. He was looking well for someone who recovered for Covid at his age.

Greensleeves profile image
Greensleeves in reply toPMRpro

Wow what a wonderful chap xx

Greensleeves profile image
Greensleeves in reply toTheMoaningViolet

Hi Violet , thank you, it is frightening. The gentleman did marvellously well . I think I’ll stay at 10mg for now whilst still having strange symptoms and recovering.

At least I’ll get back down to 3mg this year some time.

Take care xx

TheMoaningViolet profile image
TheMoaningViolet in reply toGreensleeves

I think we often know exactly what we need to do, but this forum enhances the courage of our convictions. Vx

Greensleeves profile image
Greensleeves in reply toTheMoaningViolet

It certainly does Violet . I only tend to ask for advice when concerned or dealing with the unknown. This forum has been an absolute godsend. xx

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